My husband is taking part in this blind trial in the UK and is in the middle of his third cycle.
I thought I would reach out to others who may also be taking part so we can support each other.
(I had started a discussion a few weeks ago but spelt the trial name incorrectly, maybe why I hadn’t heard from anyone)
Hello I read your message and wanted to reassure you about the dosage. I'm on 4600mg a day. I'm 5ft 2 and I weigh 77kg.
I'm at the end of cycle 6 and I'm exhausted. But the end is in sight.
Hi Valerie,
Tuesday was just a clinic appointment and we were told his scan (first since starting treatment) is clear which is a great relief. We return on Friday for the 5th infusion. He started on 4300mg daily but was extremely tired & it affected his white blood cell count. He is just under 6 foot & is now back up to 98kg. They also explained it is calculated on body weight/height but said it was probably due to his age (76) he didn't tolerate it very well & consequently reduced it to 3000mg daily. (He also had a 3 week break until his bloods recovered) He was definitely more tired on his 4th cycle & this is probably because of the accumulative nature of the treatment but his bloods have been fine. And no allergic/rash reaction on this cycle. We think his hair is slightly thinner but not so you would notice.
If your blood results are all within range maybe that's why your doctors feel you should keep on the same dose? It must be awful feeling so unwell and the uncertainty of your healthcare/pension sounds very cruel. (Mr Trump is getting lots of publicity over here at the moment, mostly unfavourable, but perhaps we had better not go there). When you feel up to it, it would be interesting to list all your symptoms.
I hope you start to feel better this coming week. I am wondering if you should start another thread relating to your whipple surgery which maybe adding to your side effects? Others might be able to offer some helpful advice.
Do take care & look after yourself, every cycle is one behind you.
Sending a warm hug & healing thoughts
I’m expecting my husband’s side effects to increase as he progresses through the latter cycles.
Your dose is quite a bit higher for someone smaller, you are doing so well to manage the side effects. While I am pleased he has minimal side effects, I hope his dose is high enough to have a successful outcome.
I’m pleased for you that you that you are nearing the end. It will be interesting to see how everyone is just on the infusion.
Having said earlier my husband’s allergic reaction episodes (they last about an hour) had stopped, he had a mild one a few days after!
Sending well wishes
I never had my third cycle. I have been in hospital 9 days very ill from Capcitibine destroying my digestive system. I will advise as I get updates
Oh Valerie, I’m so sorry to hear this. You sounded quite unwell in your last message. I hope you are improving & comfortable. Do keep us posted. Sending a big hug & praying for a speedy recovery xx
I was in hospital 13 days with excess gastric fluids and an ileum and enteritis. The first 24 hours a tube was inserted from my nose to my stomach and 3 liters of fluids were extracted. In total they kept the tube in me for 4 days. I lost my voice and was allowed nothing by mouth I lost another 9 pounds and a thick layer of dry skin off all my finger tips to the first joint. All my blood numbers were low white and red cells potassium magnesium folic acid and B vitamins. I also had an elevated temperature for infection that had me on antibiotics for10 days I arrived home 3/13 so weak my husband and niece had to lift me up the stairs today 3/15 I still don’t have the strength to stand freely I’m working on controlling my digestive system and hope to get strong again Monday I have a team meeting with clinical trial team and oncology for a care plan going forward. For the times being I have been off all chemo meds since 2/26 I have no doubt I was given the immunotherapy trial drug 2 doctors in hospital told me immunotherapy caused this terrible episode I will report back to everyone after Monday meeting I am happy for everyone here progressing with your journey back to good health
hugs to everyone
I forgot one more issue my right hand has episodes of tingling and numbness that comes and goes
What an awful time you have had, I hope you soon start to improve & regain your strength.
Good luck tomorrow, I hope the team can suggest a pathway to ensure a speedy recovery. I believe I read in the introductory info that if you experience severe side effects the doctors can request confirmation to find out if you were on the trial drug.
Do let us know the outcome of the meeting, you are very much in our thoughts xx
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