My last update on the blog was in June 2017. I didn't think I would be back here sitting in front of my computer and blogging on our second journey with Multiple Myeloma for some time yet. But such is life.
Up until November 2020 Jimmy was still seeing Prof Novitzky every 3 months for full blood counts to keep a close watch on things. On the 19th of November Jimmy had bloods done and Prof let us know that there was some cancer activity.
I started a WhatsApp group for family and close friends in December 2020 to keep everyone updated on Jimmy's treatment. My reason for doing this update is that initially we thought Jimmy would have chemo for a few months which would bring his cancer counts down and then be on maintenance therapy for a year again. But it has been a lot more involved and drawn out than what I can now describe as maybe what we were hoping for. Jump forward to now, May 2022, and Jimmy will soon be having a second Stem Cell Transplant. So I thought it would be a good idea to get the blog up and running again. Quite honestly, it is much faster to type here than type into a message on WhatsApp.
When I started the blog my idea was that I would blog as a mother and wife about our journey with Myeloma, which I did. But I haven't done this with the WhatsApp group as it has just been a place to do factual updates. So I will now do these updates here and then carry on blogging in separate posts as I did in the past. For anyone that joined the WhatsApp group late, this would also now be a place where you can read any posts previous to when you joined.
22 December 2020
Yesterday morning, while I cooked breakfast for our guests, Megan took Jimmy through to Rondebosch Medical Centre Hematology Clinic so that Prof could do Jimmy's Bone Marrow biopsy and aspiration. Prof took 2 samples measuring between 1,5 and 2cm. Jimmy said it was a bit eina and Prof actually said he thought that he didn't give Jimmy enough anesthetic just before he took the second one.
By later in the afternoon he was out to take a client to do a viewing. And this morning he said it just feels a bit bruised....so all good.
23 December 2020
So...Bone Marrow Biopsy (BMB) was done on Monday and yesterday Prof phoned to say he wanted to see us at 9am this morning.
Results of the BMB are that there is a varying cancer percentage of between 20% and 60% over the 2 bone marrow samples.
Prof says that at this stage Jimmy wouldn't feel any different, but within the next 2 to 3 months he would start having the symptoms he had by the time he was diagnosed last time ie bone pain, suppressed immune system and the percentage cancer would be closer to 60% in the bone marrow with little to no variation. Last time Jimmy also nearly had to start dialyses but at the moment Jimmy's kidneys are still functioning well.
For this reason, Prof has already done the motivation to the medical aid to start chemo by mid January 2021. It will be the same 'cocktail' of chemo that he had 1st time around, once a week over 6 months as well as other meditations like cortisone etc.
Once chemo is finished, Jimmy will have another Stem Cell Transplant and then go onto maintenance chemo. And in Prof's own works "and then hopefully another 5 years where the cancer count is between 0 and 5%" (which he refers to as undetectable).
I must say, we knew this day would come, but I thought it would be closer to the 10 year mark. And since November, when we were told that there is some cancer activity, I have felt very positive and thought I was ready for this. But after seeing Prof this morning I am in shock and feel quite shaken. I suppose it is the reality of it sinking in today. And added to this, I though it would be a much lower cancer burden with a low dose chemo regime to sort it out and life wouldn't change too much.
Once again, we are all reminded that life can change at the drop of a hat. Tell that person you love them and don't be like me and sweat the small things!
Lots of love Viv.
24 January 2021
Just a quick update. The haematology clinic opened yesterday and Jimmy's chemotherapy treatment has been approved by the medical aid. So we have an appointment with Prof Novitzky on Thursday at 12h00, after which I am sure I will have some more information to share.
28 January 2021
So, on my last update we were going to see Prof Novitzky on Thursday, 14th January. At the meeting Prof discussed that Jimmy's Myeloma counts had increased from November to December and again from December to January. He also told us that Jimmy's kidney function is not 100%. Chemotherapy treatment is to be once a week for 6 cycles (4 treatments to a cycle) and done intravenously. Jimmy asked if he could have chemo each Friday as this will give him the weekend to recoup and deal with any side effects like diarrhea etc. Prof wanted Jimmy to start as soon as possible and said the following Friday was too long away. So we agreed he'd have his first round on Monday, second round on Friday of the same week and third round the next Friday and then each Friday after this. So tomorrow being Friday, is Jimmy's third round (just so that you know where we are).
Jimmy is not showing or experiencing any hectic side effects yet but his blood counts have already started dropping so we'll have to keep an eye on these as this will affect his immunity. They do a full blood count before each treatment to see where Jimmy is and what the numbers are. And he won't admit it but he is falling asleep, into a deep sleep, each night in front of the television. So he is definitely more tired.
Cancer Care at Rondebosch Medical Centre is very nice. The staff are amazing and very caring. On our way out from the appointment we also went to reception to get all the phone number of each department and find out what happens where, as Rondebosch Medical Centre is new to us. Should Jimmy spike a temperature of 38 deg, I have to phone them to let them know and then take him through as quick as possible so that he can be admitted to High Care and put on intravenous antibiotics to catch any infection as early as possible.
The only other bit of news is that the medical aid have slapped the treatment with a 25% co-payment, which Prof has said shouldn't be, so he has his lady fighting that for us. Holding thumbs they can sort this out because the chemo is R160k.
And then lastly, I just wanted to say thanks very much for all your messages, thoughts and support. It means a lot to us both.
Love Viv
22 February 2021
Hello family and friends
Friday, 29th January was Jimmy's 3rd chemo treatment and Friday 5th February was his 4th and final treatment of his first cycle.
Jimmy has experience some side effects from the chemo but they seem to be mostly under control due to nausea, diarrhea and sleeping tablets.
First treatment of each cycle is on a Thursday as Prof doesn't consult on a Friday. He likes to catch up on Jimmy's general well-being and weigh him and discuss any concerns from both sides. They also do Myeloma bloods just before he goes down to Cancer Care so that the results are a reading of a completed cycle of chemo. So Thursday, 11th February was Jimmy's first treatment of second cycle.
Prof's PA, Faye, emailed the results to me once they had them but they are a bit all over the place. Counts that should be dropping have dropped and some have gone up. And counts that should be going up have gone up and some have come down. I chatted to her and she said it is early days but if there was anything of concern then Prof would've phoned or scheduled a consultation.
Jimmy was due for his next chemo treatment this past Friday but his blood counts have bottomed out. Prof said to come back this morning, but they were still too low. So Jimmy will have bloods done again on Friday to see if he can have chemo.
If they stay too low then he will go on to Neupogen injections which I will give him at home, once or twice a day. Neupogen is used to help your body make more white blood cells which are important to help you fight off infections.
Unfortunately, delaying chemo treatment does break the momentum, but it is not worth having chemo when Jimmy is so immunocompromised.
Lots of love
1 March 2021
Just a quick update - Jimmy's blood counts came up enough between last Monday and Friday, so he had chemo on Friday. We've lost a week but we're back on track.
11 March 2021
Greetings Everyone
Jimmy had full blood counts done this morning and was given the okay for chemo.Yay!! No more missed treatments 😊. I was a bit worried today would be another no treatment day. This was then followed by Myeloma bloods, he then had chemo and then we went back up to Prof for the monthly consultation.
There was a bit of confusion because the last treatment of a cycle of chemo is done on a Thursday. But Jimmy missed one treatment, so today wasn't actually the last treatment of this cycle. So....going forward he'll have chemo each Friday and on completion of a cycle, Jimmy will see Prof to have Myeloma Bloods done on a Wednesday. This will give Prof 2 days to get results back and change the chemo script if necessary so that it is ready for the Friday when he starts the new cycle. If Jimmy misses any treatments due to low blood counts, then the consultation will be rescheduled to when the cycle is completed.
One reason for this is that there wasn't much difference in his cancer counts between Myeloma blood results and Prof might make some changes to the chemo cocktail. My feeling is it's still early days, but let's see what today's Myeloma blood results are like.
Jimmy's platelets are also quite low now. So we have to keep an eye out for bruising and he must be careful he doesn't injure/bump himself as blood clotting could be a problem. Jimmy did have this issue first time around too.
So unfortunately he'll have to give up running and mountain biking for now! Haha...joking😄
Generally Jimmy is doing well. No side effects that are affecting his day to day life and he is still working, which I know he is happy about because he gets out of doing work around the Lodge 😝. We are all a bit stressed and the worry comes and goes, but mentally I think Jimmy is okay. Unfortunately, for the bubbly, social person that he is, he doesn't communicate his thoughts or feelings about his cancer. But we do all know he is a very strong person 😍.
Love to all 💗
25 March 2021
Hello and just a quick update...
Jimmy could not have chemo last Friday because his blood counts were too low again. He went through on Wednesday and was able to have chemo. So this was the first treatment of the 3rd cycle. Next chemo is next Wednesday.
Stay safe and take care 😍
17 April 2021
It's been a bit quiet on our side with not much to report. A case of no news is good news 😊.
Jimmy had chemo on Friday (yesterday). This was his last treatment of 3rd cycle. So we are officially halfway through 6 cycles of chemo treatment 👍.
He is doing very well. Most side effects are controlled by medication so he isn't really being affected by them. He is tired by the evening and sleeps in front of the TV each night. Except for on the day he has chemo. Then he's like the energizer bunny and wide awake. A bit like jack-lighting....with the rabbit in front of a vehicle's headlights! 👀😂
To give you an idea of his blood counts -
WBC (white blood cell count) 2.2 (normal range 4.0 to 11)
RBC (red blood cell count) 3.70 (normal range 4.0 to 6.50)
HGB (hemoglobin) 12.8 (normal range 13.0 to 6.50)
PLT (platelets) 93 (Normal range 150 to 400)
On Wednesday we have our monthly consultation with Prof Novitzky and they'll also do Jimmy's Myeloma bloods to see what his cancer count is looking like. Since we are half way through treatment I think we'll get a good idea of how treatment is going etc.
And that's about it! 💗
19 May 2021
Time for an update and some good news 💗
Jimmy completed the 4th cycle of chemo on Monday and saw Prof this morning for his monthly consultation and post cycle Myeloma Bloods. (Sorry Ant..I forgot about golf!) Prof is very happy with Jimmy's results so far and said it's good to hear he isn't battling with any hectic side effects.
As per his previous Myeloma blood results (at end of cycle 3) there has been a 50% reduction in Jimmy's cancer count. So hopefully today's blood results will bring even more good news.
Prof said that if we continue to have such positive results from the chemo then there is a chance Jimmy won't have to have another stem cell transplant, and he'll continue with this chemo cocktail for a while longer as a maintenance therapy. But said he's not committing to anything yet 😉. We'll see what the picture looks like after 6 cycles.
I should add that we got a puppy a month ago so I haven't been with Jimmy to his monthly consultation with Prof for this and last appointment. This agreement is that he can go on his own, on condition that he records everything, which he does. Prof thinks this is very funny 😀.
It's wonderful to be able to share such good news with you all. I'll do a quick update when I get today's Myeloma bloods results.
Our new puppy Riley
Lots of love 💗
5 July 2021
Hello everyone 😊
A long overdue update. But you probably know by now that no news is good news.
Jimmy completed cycle 5 of 6 treatment cycles on the 14th of June. He had Myeloma bloods done on the 17th and there has been a more than 60% drop in his cancer count!!
Jimmy has had his 1st and 2nd chemo treatments of cycle 6 and having the 3rd this morning.
Due to the success of the chemo treatments, Prof has already motivated to our medical aid for a 7th cycle as he believes by the end of this, we'll have seen a nice drop in Jimmy's cancer count. This is such positive news!
I've had my 1st Covid-19 vaccine and Prof has to move treatments around for Jimmy to have his. So the plan is to have his vaccine next Monday the 12th. He will then skip 2 treatments of chemo and have the 4th treatment on Monday the 2nd of August. And another treatment on the following Tuesday (so 5 in the 6th cycle). And then Jimmy will see Prof for a post treatment consultation and Myeloma bloods on the 12th of August.
So this means a little delay going forward with chemo (Prof likes to keep the momentum going) but I think its worth it so that Jimmy can have the vaccine. It might also do his body good to have a break from chemo so his blood counts can come up a bit. And hopefully some chemo freedom will mean we can take a break and go camping for a bit too.
Sending you all lots of love. Take care and stay safe.
19 August 2021
Hi Everyone 😊
So not the news I thought I would be sending you today but here goes...
Jimmy completed his 6 treatment cycles of chemo on the 26th of July. They did Myeloma bloods the week before last and he had a post chemo Bone Marrow Biopsy, done last week on Wednesday.
We saw Prof this morning to discuss all the above results and hear if Jimmy was going to on to maintenance therapy for a while or have a Stem Cell Transplant. At last consultation Prof was leaning towards a SCT (stem cell transplant) as he believes Jimmy would have a better chance of another 5/6/7 years of remission before he relapses again.
Although the Myeloma bloods have been showing a positive reaction to the chemo, the results of the Bone Marrow Biopsy have showed that there is still a 30% to 40% cancer burden in the marrow. Prof explained that this is the very reason why a bone marrow biopsy is done, as it does give the best picture of what is going on. He also said that it is not uncommon to have this result as the body can build up a resistance to the chemotherapy.
Prof is going to send off his motivation to the medical aid that Jimmy does another 4 cycles of chemo treatment. He is going to swap out one of the drugs in the cocktail and replace it with Thalidomide (actually a 'parent' of Thalidomide). The result being a stronger cocktail but still with few side effects. The chemo will be weekly as it has been and the Thalidomide will be given for 21 days out of 28. He needs the week's break as it will lower his platelets counts. He will also go on to blood thinning meds as the cocktail has a tendency to cause blood clots. Jimmy will continue to have Myeloma bloods done during the treatment as has been done and Prof will monitor the results.
If no significant improvement is achieved, then Prof will change the cocktail to an even stronger one, where there will be the side effects that Jimmy had whilst doing chemo in 2014/2015 with hair loss and a very suppressed immune system etc. And finally, once the cancer burden is brought down to as low as possible, Jimmy will have another Stem Cell Transplant.
I'm not sure of what else to say, other that we are feeling disappointed. But this is cancer for you! I do feel blessed that we still have options going forward and hope that the new cocktail will do it's thing.
Take care and be safe 💗
4 October 2021
On the 17th of September I did a family only update as we received the very crappy news that the medical aid turned down Prof's motivation he did for Jimmy to have 4 cycles of the new chemo treatment 😭. It is a very expensive treatment and doesn't fall under the PMB (prescribed minimum benefits) spectrum. The motivation went in front of a panel of oncologists and the outcome was that the medical aid were prepared to authorize it for 2 months with a co-payment of R120 000,00 for the 2 months. We are just not in a position to pay this.😟
At last consultation with Prof, when he explained this treatment, he did say that if this didn't have the desired effect then Jimmy would go back on to the 'red devil' which was the very strong chemo he was on in 2014, with all its side effects. I questioned why Jimmy couldn't just go straight on to this now, if he can't have the treatment Prof was suggesting. My thinking being that Jimmy's body is still in a good place and would handle it better now, than after 4 months of chemo that might not do the job. We didn't really get a response and haven't seen Prof again since the post 6 cycle chemo treatment was completed. This is also why I didn't update because we had no idea when the next step would be.
And in the meantime the weeks have been ticking by with no treatment and I have been panicking because I'm sure Jimmy's cancer count will be going up.
Well....you won't believe what happened!! Last week we got a call from the medical aid to say the new treatment has been authorized for 3 months. And this is because the expensive chemo drug was added to the PMB spectrum with no co-payment. I mean...what are the chances of this happening?? 😍😍 There are 3 that make up the cocktail. The 2nd one has an even lower co-payment that what we were paying per treatment up until now and there is also no co-payment on the 3rd.
Prof's rooms called this morning to arrange for Jimmy to have an echo-cardiogram which he has to have before starting the new treatment to make sure his heart is okay and strong enough.
I'm not sure if we have to see Prof again with these results or if Jimmy will just start the new treatment, but as soon as I know more I will update again.
And then I'd like to make mention of a special friend who has a prayer group and they have been praying and praying for Jimmy. Thank you 💗💗
We remain blessed and thankful that we can now continue this journey again 😍
Take care, stay safe and lots of love 💗
12 October 2021
Just a quick update...
Jimmy is seeing Prof on Thursday to discuss the ins and outs of the chemo treatment and his echo-cardiogram is scheduled for straight after this. Once Prof has these results we will know when Jimmy will start the new chemo treatment.
Here's hoping that I can update again on Monday and we can get the ball rolling.
18 October 2021
Jimmy had his consultation with Prof Novitzky on Thursday and his echo-cardiogram results were good and he was given the go ahead to start the new chemotherapy regime.
At the consultation Prof explained that he was hoping to get a better result with chemo treatment that Jimmy was on, and to continue on it is unlikely to result in a different outcome. With the new treatment he has replaced the Cyclophosphamide with Doxorubicin. Doxorubicin is the 'red devil' that Jimmy was on in 2014. But this time around Jimmy will have a slightly lower dose once a week. Previously he had a stronger dose once a week for 2 weeks and one week off. (at least I think it was 2 weeks or maybe 3).
It is a more potent drug and has more side effects and Jimmy is likely to lose his hair. It can effect the heart and this is why he had to have the echo-cardiogram. They'll do another one at the end of the treatment. It can also cause Mucositis which is the breakdown of the cell linings in the gastrointestinal tract that runs from the mouth to the anus, leaving the mucosal tissue open to ulceration and infection. It is more myelotoxic, meaning it will also drop Jimmy's blood cell counts more intensely than the previous treatment, but this will be checked prior to each treatment (as has been done). Some patients will need transfusions and if this is the case then Prof will order a hormone which will boost the red cells to avoid transfusions. Prof explained that everything has a solution and Jimmy needs to communicate and point out things that worry him or things that Jimmy is uncomfortable with. Doxorubicin will also cause nausea and diarrhea but Prof has already written up a script that Chemo Care will give him (3 scripts just for nausea!!). Basically between all the drugs, the side effects are nausea, vomiting, diarrhea, hair loss, lowered blood cell counts, sores in mouth and throat, insomnia, easy bruising, muscle weakness and tingling/pins and needles.
(For the medical people on the group, Jimmy is on Doxorubicin, Dexamethasone, Bortezomid and Eurolen.)
So Jimmy started his 1st treatment today. They did full blood cell count and Myeloma bloods before they plugged him in 😉. I am very interested to see the Myeloma blood results as Jimmy has been off treatment for almost 2 months.
Prof said that next year Jimmy will have another bone marrow biopsy post treatment to see how good the result is. He also said it's very important to maintain the medical aid. Last time Jimmy had cancer Prof used originator drugs but they have now been replaced by genetic versions. The next generation drugs are expensive but needed because Jimmy's body has built up a resistance. He said he usually prescribed 6 cycles and the drugs alone are about R100k a month which is why the medical aids refuse them.
I'm not 100% sure if Prof is thinking he may have to put Jimmy on these at the beginning of next year when we have the full benefit of the medical aid again. We'll remember to discuss this at the next consultation.
Thanks so much for all your love and support. I'm just happy that treatment has started again.
We got this!! Lots of love 💗
8 November 2021
Hello 😊
First of all, apologies, as this update should have been done last week 😐. I've been a bit slack...partly because I knew it would be a long one!
So Jimmy has his first 2 Monday rounds of chemo. Last Monday was a holiday so he went in on Tuesday for his 3rd round of chemo (or to be plugged in to Koeberg as he calls it 😀) and couldn't have chemo.
White Blood Cells were 0.7 (normal range is 4.0 to 11.0).
Platelets were 36 (normal range is between 150 to 400).
The rest were also low but not too badly out of Jimmy's range, which is different to your or my range.He had a really crappy week and was very tired and slept a lot and didn't have much of an appetite.
The results from the full blood counts were -
Leukopenia - low white blood cell count is a decrease in decrease-fighting cells.
Lymphopenia - lower than normal number of Lymphocytes, a type of white blood cell important in the immune system.
Neutropenia -abnormally few neutrophils in the blood, leading to increased susceptibility of infection.
Monocytosis - where the monocyte count exceeds the upper limit or range and can indicate you are fighting as infection.
Thromocytopenia - a low platelet count that means he has a greater risk of serious bleeding and bruising.
Jimmy had to go straight on to Neupogen injections at home, once a day for 5 days. This is where Nurse Vivienne kicks in to actions 😃.
Neupogen is a synthetic or man-made form of a substance that is naturally produced in your body called a colony stimulation factor. It helps the bone marrow to make new white blood cells.
We also got the results of Jimmy's Myeloma bloods that were taken prior to his 1st chemo treatment on the new cocktail. You might remember that I was quite interested to see these and see what the change was between completing 6 cycles of chemo and then starting the new one, where there was a break with no chemo for about 2 months.
At start of chemo Jimmy's MProtein was 12.9. When he finished 6 cycles of chemo it was 2.7 and he has started the new chemo on a MProtein (or para-protein) concentration of 3.4 so some increase there.
The good news is the Neupogen injections did their trick and Jimmy is having chemo today.
Stay safe and take care 💗
15 November 2021
Last Monday when I updated, Jimmy was having chemo after missing a week, but I didn't have the printout of his blood results yet.
So just to backtrack a bit....the previous week he couldn't have chemo because his WBC (white blood cells) were 0.7 (range 4.50 - 11.0) and his platelets were very low too, at 36. We did 5 days of Neupogen injections at home and when he had chemo last Monday his WBC was a whopping 8!! The Neupogen definitely did it's job.
Back to today...Jimmy had chemo again today. His WBC are sitting at 2.5 and platelets at 57. I think we're going to seesaw a bit with these counts over the next 3 months and he will more than likely have to have Neupogen injections in between again. Unfortunately each missed week of chemo is a week added on the end, but if it's a month longer that's not too bad. There's nothing we can do about it anyway.
Overall Jimmy is feeling much better and has a lot more energy that he did 2 weeks ago. I think he looks a bit pale but he say he's fine 😊.
Today was 4th treatment of first cycle done and dusted. Jimmy has a consultation with Prof on Thursday. I don't think he'll have much to report as they'll only do Myeloma bloods on Thursday and Prof won't get the results till Friday. But he will do a check-up and find out how Jimmy is feeling etc.
If there is anything new to report after Thursday's appointment I will let you know.
Lots of love 💗
20 November 2021
Good morning family and friends. A good news update for today.
Jimmy had Myeloma bloods done on Wednesday so that they were available for his 1st cycle appointment with Prof on Thursday.
When he finished the 6 cycles of chemo his MProtein was 2.7 and then increased to 3.4 during the time he wasn't having chemo. And as of end of 1st cycle of chemo on the 'Red Devil' his MProtein is 1.5 This is fantastic news! Woohoo the Red Devil is kicking ass! 😀
A couple of friends have asked if it's good or bad that his counts etc are low...If Jimmy's full blood counts are low it is bad because it means that he is susceptible to infections and internal bleeding and bruising etc. It also delays chemo. But it is also good because it means the chemo is working because if it's destroying blood cells, it is also destroying the cancer. The other bloods that are done are Myeloma bloods. And this is where the MProtein or Paraprotein count indicates the cancer count. It is good if this is coming down. They class a MProtein of up to 0.5 as undetected, although there is still this small presence because with Multiple Myeloma you can never go into 100% remission as it is in the blood.
For now Prof has said he will continue with treatment to get the MProtein as low as possible before Stem Cell Transplant as Jimmy will have a better chance of a longer 'remission' the lower it is.
Prof also gave Jimmy antibiotics as he has had a cold for about 3 weeks now. It is actually an upper respiratory infection, but by this morning Jimmy is already feeling better. I caught him drinking his pills from the tot measure that I use for my pills and has now passed it on to me 😑. But we all know women are much stronger 😆.
I hope this explains it better.
Lots of love 💗
23 November 2021
Just a quick update....
Jimmy didn't have chemo yesterday as his blood and platelet counts are too low again. He'll have 3 Neupogen injections this week at home and go back on Monday again. 💗
6 December 2021
So after 3 Neupogen injections the week before last Jimmy had chemo last Monday and again today 😊. Today's is the 2nd treatment of the 2nd cycle (we're running 2 weeks behind).
Other than a bit a nausea during last week Jimmy is doing well and also seems to have at long last gotten over his sinus infections.
Have a great week everyone and take care 💗
16 December 2021
Hello 😊
So I was waiting till tomorrow to update as Jimmy didn't have chemo last Monday because his white blood cells and platelet counts were too low. We've done 5 days of Neupogen injections and he would've had chemo tomorrow.
The plan was then to take a 2 week break so that he could get his Covid booster and then resume chemo.
But Jimmy woke up with a runny nose this morning and went to get tested. Incubation is 2 to 5 days and 5 days was Tuesday. So between Tuesday and Friday (more or less) he would have been in contact with someone positive. Please be very careful as the symptoms seem to be very mild, Jimmy only has a runny nose.
We're going to isolate for 10 days - Christmas in isolation 😒. I'll only post again if there is anything to update.
Wishing you all a Merry Christmas and safe travels if you're going away
💗
6 January 2022
Hello everyone and Happy New Year! I'm feeling very positive that 2022 is going to be a much better year for all of us 👏.
So going back to December....Jimmy tested positive for Covid on Sunday the 19th. Emma and I both got tested on the Monday and we were negative and in the meantime Jimmy was banished to one of the guest suites to isolate.
On the Tuesday evening I went to bed with one heck of headache and an extremely sore throat. And Wednesday morning I tested positive. So Jimmy moved back up to the house and I cancelled the bookings we had and we banished Emma to another guest suite to isolate from us. She tested twice in the time that we were isolating and was negative both times with no symptoms. I felt really rotten and by the 3rd or 4th day I started a course of antibiotics. By day 7 I was feeling almost 100% but still had fatigue.
A big thank you to Tanya 💗 for Uber delivering a meal for us. And to Maureen 💗 who delivered us a meal and a couple of microwave meals for Emma that she could prepare for herself in the guest suite.
We had a very quiet Christmas with no family or guests. The positive was we were able to rest which counts for a lot with Covid. I am just so thankful we both got it during Omicron and not Delta. I really was terrified of getting Covid 😱.
On Monday Jimmy reported for chemo. They didn't give him a printout of his bloods and platelet counts, but he basically snuck through a treatment. They actually gave him a Neupogen injections to bring home and take for the week but gave him one at the hospital before they plugged him in. So he has just had 3rd treatment of 2nd cycle out of 4 cycles.
I'm not sure when he will be able to have his booster vaccine but I'm sure they will let us know. The other good news is that Jimmy is back on Purbac, which is an antibiotic he takes each day whilst busy with chemo treatment. There was a problem with stock and I don't think the pharmacy followed up with Prof either. Jimmy hasn't been on Purbac since he started the new chemo treatment in October. I also wasn't aware of this. It's quite frustrating because I'm sure he would not have got the sinus infection he had, if he was taking them. And obviously medically I don't know how this would have impacted him getting or not getting Covid but his body would have been run down post his sinus infection and on top of chemo. Now I know to check that he gets all his pills each month!
And that's it for now 😊. Lots of love 💗
17 January 2022
Last Monday Jimmy went for chemo and his blood counts and platelets were too low, even after having Neupogen injections at home, so he didn't have chemo.
He didn't get more Neupogen injections but usually after a week's break they come up enough to have chemo. This morning he went to have chemo and in spite of having a 2 week break and the injections the previous week, he couldn't have chemo today either. His counts have really bottomed out. So we've got more Neupogen injections to take this week and hopefully we can get back on track again next Monday.
The delays are frustrating. 2021 Was supposed to be chemo for 6 months and then Stem Cell Transplant. And here we are into 2022. Jimmy started 2nd cycle on 6th December and we still haven't finished this cycle 😑.
We're on our way for a week of off grid camping and we're both sooooo looking forward to it.
💗
26 January 2022
So Jimmy finally had another round of chemo on Monday after 2 weeks of none. This was 4th treatment of 2nd cycle. Just 2 more cycles to go!
He also had his follow up appointment with Prof after his treatment. The good news is that the Myeloma is now untraceable in the bloods 👏💗. But Prof says we all got our hopes up last time and then when he did the Bone Marrow Biopsy there was still cancer in Jimmy's marrow. So he wants to finish the last 2 cycles before he does another Bone Marrow Biopsy.
He has also told Jimmy not have his Covid booster shot. He says Jimmy has now had Covid, which is giving him some extra protection on top of the 2 vaccines. We have to stop chemo to do the booster and Prof says it is more important now to get some momentum flowing without breaks between treatments, because there have been a lot of 'time gaps'.
Once treatment is finished, hopefully by the end of March, then he will do a Bone Marrow Biopsy and then we'll discuss Stem Cell Transplant.
We enjoyed a fantastic week of off grid camping and coming back to this good news has really made me feel like we can see the end in sight. We are both feeling positive and it makes the next hurdle of Stem Cell Transplant a bit more doable.
A big sigh of relief....💗
31 January 2022
Jimmy went for chemo this morning but his blood counts were too low again, so he'll go back on Friday and see if there is any improvement.
Have a great week 😊
4 February 2022
Jimmy couldn't have chemo again today. He'll have Neupogen injections at home and then go back on Tuesday to see if his blood counts are high enough for chemo.
Officially Jimmy has (wait for it)...
Leukopenia, Lymphopenia, Neuropenia, Monocytosis, Anemia, Microcytosis, Thrombocytopenia and Pancytopenia 😵. These are fancy names for a deficiency in the 3 different white blood cells and red blood cells, enlarged red blood cells and an indication of a bacterial infection. In spite of this impressive list he is doing fine and not feeling anymore tired than normal. We will keep an eye out for any symptoms of an infection and check his temperature twice a day, but he is on daily antibiotics for the 4 months of the current chemo treatment so let's hope they do their job.
The reason he didn't bring injections home after not getting chemo on Monday, is because Prof wanted to rest the bone marrow. Jimmy had some backache while we were camping and this is a side effect of the bone marrow working too hard.
Wishing you all a great weekend 💗
17 February 2022
Just a quick update....Jimmy had chemo last Tuesday (we're doing chemo on Tuesdays now) and this past Tuesday. Counts were a bit low but he snuck in and has 3 Neupogen injections to take at home.
We are half way through 3rd cycle 😊💗
22 February 2022
No chemo today, Jimmy's counts have bottomed out.
He has Neupogen injections to do at home and meds to boost his bone marrow. And he's going back to Cancer Care this afternoon for a platelet transfusion. Prof has also decided not to do the 4th cycle of chemo.
So 2 more chemo treatment to finish the 3rd cycle and then we'll make a decision on the next step.
💗
8 March 2022
I'm super excited to tell you that Jimmy is having his last chemo treatment today 👏.
I'll update again once I know what tests he'll have in the coming weeks and then what the next step will be.
Just so thankful that we can put chemo behind us now and move on to the next stage.
💗
23 March 2022
Jimmy had a consultation with Prof this morning. Sjoe! And just like that things are happening and happening fast!! So here goes...
Results of the last Myeloma bloods done, show that the cancer is untraceable, meaning the counts are somewhere between 0% and 5%. Medical aid hasn't asked for a bone marrow biopsy, so this won't be done. Prof is happy with Jimmy's platelet counts as well as his Hemoglobin counts. His white blood cell count is still a bit low so he's said to wait a week to get these up. In the meantime we start preparations for a stem cell transplant.
23/03 - Visit the clinic and safety bloods will be done.
28/03 - Jimmy will have an echo-cardiogram and his lung function will be checked.
29/03 - Insertion of a Hickmann line under anesthetic so they don't have to keep finding veins.
30/03 - Admitted to hospital for pre-hydration.
31/3 - Jimmy will have an infusional Etoposide chemotherapy. This is a heavy dose chemotherapy prior to stem cell harvest.
01/04 - Discharged from hospital (3 days) to recover and get over the heavy dose chemo.
06/04 - He will start growth factor injections at home to boost stem cell production.
18/04 - Jimmy will have a full blood count done to check if he has enough stem cells. If not enough they will wait another 2 or 3 days.
19/04 - If Prof is happy with Jimmy's stem cell production he will be admitted to hospital for harvest of stem cells by aphaeresis. Simply explained - a machine that takes his bloods, separates the stem cells and the blood goes back into his body. And of preservation of stem cells. Prof has opted to harvest fresh stem cells as it only adds a day or 2 to the whole procedure. He is keeping the previously harvested stem cells as a back up. Medical aid has also authorized this. If harvesting takes longer that a day, which is quite common with 2nd stem cell transplant, he will stay in hospital for 2 or 3 days while this done. This is also where they will use the previously harvested stem cells if they don't collect enough, and add them to the fresh batch - also quite common with 2nd stem cell transplant.
22/04 - Admitted to isolation ward in hospital for the long haul. They will do pre-hydration first.
23/04 - More infusional heavy dose chemotherapy and transplant.
25/04 - Infusion of the graft where they put the 'cleaned' stem cells that were harvested back.
30/04 - Start of Neupogen injections to boost white blood cell production to prevent infections etc.
25/05 - 26 Days from transplant date Jimmy should be discharged from hospital if he doesn't get any infections or complications.
Last time around Jimmy was in isolation ward for 52 days but I'm sure this time around everything will go much better as he is going into stem cell transplant with a much lower (untraceable) cancer burden or count. But I suppose it will also depend on how he reacts to the last heavy dose chemotherapy.
Well, just like me, I'm sure you're trying to digest this all. And we thought the transplant would be over May and June 😑. I'm already panicking about bookings that we've got in place at the lodge.
But for now, lots of love 💗
28 March 2022
Just a quick update....the original plan was for Jimmy to have all his check-ups tomorrow and then get admitted on Wednesday for his heavy dose chemo and discharged on Friday.
He will now be admitted tomorrow to Rondebosch Medical Centre Hospital and have his heart and lung check-ups. And then he'll go into theater to have his Hickmann Line inserted. They're going to prehydrate him overnight so that he can have the heavy dose chemo on Wednesday and get discharged on Thursday instead of Friday.
Jimmy is feeling very positive and ready for this next step as we get ready for stem cell harvest.
💗
Tests all went well today but should get official report tomorrow. Jimmy was in theater for an hour and came out at 15h30.
They're going to give him the first heavy dose of chemo tomorrow morning after 10h00 and then the 2nd round on Thursday morning. He should be discharged between 1pm and 3pm.
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The Hickmann Line
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Lots of love 💗
31 March 2022
I had a bit of a wobbly on Tuesday 😢. Hematology will only allow 1 visitor between 3pm and 6pm and for 30 minutes, meaning 1 designated person for the entire time he is in isolation. This is also our check-in time at the lodge. And they won't budge. Also, it takes 10/15 minutes to access hematology and get through the procedure of stripping down to underwear and donning scrubs and sanitizing and then again when you leave. After explaining, well begging, I did however manage to convince them to allow Ewen to visit if I can't. Anyway, I did manage to visit him yesterday and I'm feeling much better now.
Jimmy is doing well and feeling good. He slept well on Tuesday night and most of the day yesterday. The site of the Hickmann line is a bit uncomfortable but bearable. Between Tuesday and yesterday he has put on 5kg 😳. A result from all the fluids they are giving him and the chemo. So Prof has now prescribed something to make him pee more. As my cousin Gail said 'pee Jimmy pee' 😂.
One thing that I am very happy about is he say the food is very nice. We had a huge problem during the last SCT in that he wouldn't eat. He is on a strict diet and his food needs to be cooked to a high temperature, so no flavour left, and he is only allowed canned or frozen fruit and vegetables etc, nothing raw.
A lot of the nursing staff moved with Prof from UCT Private Hospital when he retired from lecturing at UCT. It was lovely and very reassuring to see some familiar faces. And they promised me that they are looking after Jimmy 😊.
So today Jimmy will have his 2nd round of chemo and he will be discharged around 3pm. It will be good to have him home 💗.
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| The bag marked cytotoxic is the chemo, | he had 6 bags yesterday and another 6 today.
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Me in my scrubs
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Lots of love 💗
10 April 2022
I thought I'd do an update from my camp chair with a beautiful view of the river while Jimmy enjoys 40 winks.
Wednesday was a day short of a week since Jimmy was discharged from hospital isolation. He had an appointment to go back and have full blood counts done, to have his dressing changed on the site of the Hickmann line and to make sure there is no sign of any infection. He also started with Neupogen injections twice a day to boost stem cell production, to get him ready for stem cell harvest. If everything goes to plan they'll do blood checks on Monday the 18th and stem cell harvest on Tuesday the 19th.
Jimmy had quite a bit of nausea after the 2 days of 6 bags of chemo 😱 but this is a little better now. He's just very tired and quite weak. He is also complaining of back ache but this probably due to his bone marrow being overactive as a result of the 2 injections a day!
All things considered, in general he is still doing well and ever positive.
Lots of love 💗
13 April 2022
Jimmy went for bloods yesterday and his platelets counts were 8 (normal 150 - 400). White blood cell count 2.2 (normal 4.0 - 11.0). As a result he had to have a platelet transfusion and ended up getting home at around 6pm.
Other bloods that Prof did indicated that now is a good window to do his stem cell harvest. Prof says the window is very small, so everything has been brought forward.
He will go in tomorrow morning to start stem cell harvest. 2nd Time around harvesting there is a good change they might not be able to harvest enough tomorrow, which means he will stay the night and carry on harvesting on Friday. So at this stage we not sure if he will be home tomorrow or Friday.
And then depending on when they've harvested enough stem cells, he will be admitted to isolation to do the stem cell transplant. This could be Sunday, Monday or Tuesday. I will update again once we have definite dates.
Sjoe, this happened so fast but for Jimmy's sake the sooner the better. So basically at this state we're running about a week ahead of original dates.
Lots of love 💗
14 April 2022
I've decided to do an 'in the meantime update' so that it's not too much to type later....
Jimmy went in this morning, they did bloods and he was given the go ahead to have stem cell harvest. His platelet count was still very low so they've given him another platelets transfusion.
To do the stem cell harvest they go in to a nice big vein in the groin. But so far they've had 4 or 5 unsuccessful attempts. They make the incision, insert a pipe and then they insert a thicker pipe and a clip. But each time there is no blood flow from the pipe, but excessive bleeding due to his low platelet count. They then sent him off to radiology to use an ultrasound to find the vein and have marked it on his skin with koki. He is now waiting for a surgeon to come and do the procedure under local anesthetic.
So as of 15 minutes ago they hadn't started harvesting yet. It sounds like once they start they'll just carry on harvesting into the night and he'll get discharged very late or sleep over if they can't harvest enough.
But he say lunch was very nice...roast beef and vegetables.
💗
Last update for today..
After nine attempts, 2 of which were by the surgeon, they managed to get the pipe in and connected at 6pm.
So Jimmy is staying overnight (he is not allowed to move his right leg) and they will start stem cell harvest at around 7am tomorrow morning. Half way through, which will be about 3 to 4 hours, they will check the stem cells to get an idea of how the harvesting is going. Which means we don't know if he'll stay another night tomorrow night or come home.
What we do know is that he is being admitted on Monday evening to start the stem cell transplant process on Tuesday morning.
Lots of love 💗
15 April 2022
Good morning and Happy Easter.
Before they could start harvesting stem cells this morning, Jimmy had to have a blood transfusion.
They started harvesting at 10am. So halfway, between 1pm and 2pm, we will have an idea of how the harvest is progressing.
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The site at the groin where they harvest from
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The machine that separates stem cells from blood
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The angels taking care of Jimmy and working on a public holiday
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16 April 2022
Good afternoon 😊
Yesterday afternoon Prof made the call not to discharge Jimmy so that they could carry on harvesting stem cells till late and Jimmy would be discharged today.
This morning Prof checked the harvest and reported that after 2 days it is not enough for a stem cell transplant 😟. He also wanted Jimmy to have another platelets transfusion and a blood transfusion today.
What he has decided is that Jimmy will be discharged tomorrow morning and go back on to Neupogen injections for another week. He will then monitor Jimmy's blood counts and between 1 and 2 weeks from now Jimmy will be admitted again to do some more stem cell harvesting.
This means that the poor man has to go through having that pipe put into his groin vein again 😔. And instead of going in for stem cell transplant on Monday everything has now been pushed out by about 2 weeks.
Jimmy is however looking forward to having the pipe removed, as he hasn't been allowed to move that leg since Thursday, and have a nice shower.
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Jimmy talking to Riley
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I will update again next when we have some news.
💗
17 April 2022
Jimmy is home 😃💗
22 April 2022
Good afternoon
We don't have much news but I thought I'd do an update to keep you in the loop.
Jimmy went through to Rondebosch Medical Centre Hospital yesterday as Prof wanted to check his bloods to see if he needed a platelets or blood transfusion. I'm happy to report that his bloods are fine (for him) and his platelets count has come up to 100 (from 8).
In the meantime Prof has done a motivation to the medical for a 2nd stem cell harvest as well as some more Neupogen injections. Jimmy should start the injections again twice a day on Monday, and Prof will probably check his bloods again on Friday. If all is good Jimmy will be admitted for another stem cell harvest after this. More than likely on the Monday.
Otherwise Jimmy is feeling okay. Resting, taking it easy and staying away from germs.
Lots of love 💗
4 May 2022
Hi family and friends 😍
We have news! 😀 Jimmy had bloods done yesterday and he had a consultation with Prof, who has given the us a new program/schedule for Jimmy's stem cell harvest.
👍Thursday, 5 May - Tomorrow Jimmy will start Neupogen injections again, twice a day up to and including Monday.
👍Monday, 9 May - He will be admitted to hospital in the afternoon. Prof has added an additional growth factor medication, to boost stem cell production, that will be administered overnight intravenously. Prof says 1 or 2 doses. Wait for it....@ R100 000,00 a shot! 😱
👍Tuesday, 10 May - They will start stem cell harvesting and there is a chance he will stay another night if they have to carry on harvesting on Wednesday.
👍Wednesday/Thursday - Discharged from hospital.
👍Friday, 13 May - Admitted to hospital for pre-hydration.
👍Saturday, 14 May - Heavy dose chemotherapy (Melphalan).
👍Sunday, 15 May - Infusion of the graft which is the actual stem cell transplant 💥.
👍Friday, 20 May - 5 Days after the transplant Jimmy will start Neupogen injections again.
👍Friday, 10 June - If everything goes to plan and Jimmy doesn't get too many nasty infections he should be discharged on my birthday 😍, but we won't count our chickens before they've hatched.
I find it hard to believe that Jimmy came out of remission in November 2020. This has really been a long haul with months and months of chemo. But we are there now, and ready for the last stretch.
Please keep Jimmy in your prayers
Lot of love 💗
10 May 2022
Hi Everyone
As planned, Jimmy was admitted yesterday at lunch time for his million dollar injection 😄 and they prehydrated him overnight.
This morning his blood pressure was a bit low. They inserted the tube into his groin at 12pm. And they got it in on first try this time 👏 and started harvesting stem cell around 1pm. They've just let us know they're going to stop harvesting at 6pm. They'll give him another million dollar injection tonight and then resume stem cell harvesting tomorrow morning.
He should get discharged around lunch time tomorrow and so far everything is running to plan for his admission on Friday.
Jimmy is in good spirits and happy with the food 😉.
Love Viv 💗
11 May 2022
Hi everyone,
Prof has just checked Jimmy's harvest and they have enough stem cell for the transplant 👏💥. They have decided to leave him on the machine until 3pm and then they'll remove the tube etc from his groin. And he should get discharged at around 4pm.
We're still on track for his admission to hospital on Friday for the transplant. Jimmy asked Prof why he can't get admitted on Monday. And Prod explained so that they can give him the heavy dose chemo on Saturday and infuse the graft (transplant) on Sunday. He says if they wait till Monday to start and anything goes wrong it would be over the weekend which makes it difficult to get hold of pulmonologists and cardiologists etc. This does make sense.
Jimmy says he is 'gatvol of this place' and can't wait to be able to move his right leg again.
We get to spend a last two nights together and then Jimmy is in for the long haul from Friday 💗.
Thanks again, so much, for all the love and support. It really does mean a lot to us 🤗.
💗🤗💗
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