My consultant told me not to go to the dentist during my treat ent due to my platelets being too low. They prescribed me a good mouthwash, can’t remember what it was called but it helped with my oral hygiene during the chemotherapy.
Post transplant, I started going again and haven’t had any issues.
That’s amazing Diana, thank you so much for sharing this story of positivity and hope with us all. Can I ask how old you are? (If it’s not too nosey, sorry…) Thanks again and wishing you all the best.
Sending you love Caroline, it’s all so scary.
I had to scroll back to see what I wrote! Of course I don’t mind you asking how old I am, especially as there seems to be an idea circulating suggesting that Acute myeloid leukaemia (AML) is at best something that is treated palliatively in older people. I was 64 when diagnosed, just turned 69 now. I had my transplant in Southampton, and I know that they are offering transplants to people well into their 70s as long as they are suitable. My consultant said to me at discharge from the transplant unit ‘the hard work starts now’ and I think that’s true. It didn’t help being discharged a fortnight before first lockdown, but I had close follow up and lots of encouragement. I can honestly say that, apart from getting a little more tired than before, I feel entirely back to normal. I have eleven small grandchildren who keep me active, my husband still works part time, and I pursue various academic courses as well as keeping up with regular exercise. I even survived Covid 19 last December (received the antivirals promptly) with no worse symptoms than a bad case of sinusitis. I’ll carry on flag waving for optimism and hope after a diagnosis of Acute myeloid leukaemia (AML)!
Hi Jilly, I hope you find a donor soon. When you ask about experience of deconditioning, do you mean getting very unfit? I had a diagnosis of high risk due to dysplasia from the outset, and our local unit always gives two cycles of chemo before transplant regardless of complete remission after the first. I had flat neutropenia with my first round of chemo (it was CPX 351 which is now marketed as vyxeos - it was coming off trial when I had it), and again after second cycle. Consequently I was in hospital for six months, apart from five days at home between the two cycles. As you can imagine, stuck in an isolation room with yoga as my only exercise option I lost quite a bit of weight. I did have an exercise bike in my room that the physios found after a few weeks. When I got home from the transplant I struggled to walk 100 metres, I was so deconditioned (previously I’d been a runner, half marathons etc). All I can say is that you just have to be determined, go for little and often, achievable goals, and you do get your fitness back. What nobody warned me about was the psychological effect of change in body image. I got very bloated with ciclosporin, had swollen ankles - and then later I got skin Graft-versus-host-disease. Before transplant I was size 8/10 (I’m 5ft 9in) but for nearly a year after I had to get size 12 clothes - just fluid shifts. It does all settle, and as I say, I’m totally back to normal, but it takes time. I’m also back to walking a minimum of 5 miles a day, 10 miles 2-3 times a week, and sometimes 15+ miles with my husband at weekends. I really hope it all goes well for you - it’s daunting at the beginning, but I’ve always found the transplant nurses incredibly helpful.
Hi everyone sorry I haven’t posted on here recently. I have completed my second cycle of chemotherapy 8 days instead of 10, my only side effect being the constipation though it was absolutely awful. Iam going home today after 24 days, less than first cycle, consultant said I win the reward for by far being the easiest patient going through treatment on the ward. It did make me smile so I did ask do I get a trophy for that?
Hi @Caroline30 really glad to hear from you.
Well what an accolade ‘for by far being by far easiest person going through treatment on the ward’, I shall award you a virtual gold star.
Sorry to hear about the constipation, it really makes me feel rubbish and it can be painful too.
I expect it might feel quite weird actually going home, but I always think there is nothing like my own bed and food.
Really take lots of special care of yourself and please do let your medical team know if you have any symptoms, that is what they are there for. Please do keep posting
Hi Caroline,
Glad your well enough to be home. I was surprised just how much the second cycle took out of me. Returning home I hadn’t the energy to do anything but also guess that’s partly because I was home quicker after second cycle than the first. Hope you’re soon feeling better and the symptoms not too bad.
I’m just waiting for a transplant date hopefully in June. Anxious about another inpatient stay but ready to get this next stage done.
Take care
Jill
Oh @Jilly Please do keep us posted and really look after yourself and recharge your batteries
Hi, thought I’d see how everyone is doing. I was hopefully going in for transplant this month but issues pinning the donor down mean it’s not happening. Took the setback hard initially but trying to push on now.
Consultant has rang me and mentioned potentially I might have to have more chemo now due to time frames and they might need to look at the next donor on the list, not as good a match but still … Has anyone else experienced this with donor registrants? I guess it’s a big ask getting that phone call out the blue to donate.
Hi @Jilly
Thanks for your update. I am sorry to learn things have stalled re: transplant. We experienced this when my daughter was due a transplant. What I would say is there will be a lot of work going on ‘behind the scenes’ to contact your donor match/look for other suitable donor options. Can just be so disappointing and frustrating but hang on in there…
The chemo will probably be a ‘bridging’ chemo to ensure you stay in remission. Do take good care of yourself and keep us posted.
Sarah
We did have the same thing. My husband was ready to go at the end of March and at the beginning, there were donor troubles. We did have to go back to the registry and take another look at options. It was a hard moment for both of us and it did take me a good couple of weeks to get my head around it and reset my expectations.
Be kind to yourself and take care.
My anxiety is through the roof atm, I have been home almost 3 weeks longer than I expected, BMB was last week later than normal after discharge but had no follow up from medical team regarding my admission for cycle 3. I phoned CNS and Haematology today but one just rang and the other was an automated message which I found strange. Thinking I should contact cancer ward has last resort even though my admission and treatment is my consultant’s decision. Having a cough and cold this last week but no temperature, has also got to me. Its the not knowing, waiting, lack of support, and feeling forgotten atm. Is three weeks to long to go between cycles?
@Jilly I just wanted to say Iam sorry that your transplant didnt go ahead has originally planned. Hopefully you can share good news with us all soon, take care and be kind to yourself.
Hi Caroline,
Sorry to hear this and it’s understandable you’re anxious. My advice would be to contact your consultant secretary and explain you haven’t heard anything can she check with them about a date for next cycle. You can usually reach them via switchboard.
I’m ok, luckily my current hospital trust is seeing me weekly for bloods as I will need to move to another hospital for transplant. So atm I’m attending both. Fingers crossed they will get confirmation from a donor soon.
Take care x
Oh @Caroline30 I am sorry that you have so much anxiety.
Yes, please do not give up contacting your CNS, they are very busy hands on people and often do not just sit by a phone.
You might even contact your consultants secretary, as consultants are also very busy
Failing that you have the cancer ward or your GP, who might also assist with your anxiety.
The Blood Cancer UK support line is also there for you on 0808 2080 888
Please do let us know how you get on and be ever so kind to yourself, of course you are anxious, I would say that is very normal
Update on yesterday’s post, anxiety decreased
I managed to get through to CNS, they spoke to consultant, Iam next on list for bed will be in touch when available and to discuss next cycle etc. Guess that’s why they haven’t been in touch but doesn’t help with my anxiety. I told CNS that I will need time to arrange transport, didnt say this but Iam also not going to wait around for hours for covid result or room to be ready like previously, I will go home and they can ring when all is sorted. No more wasted time waiting around.
Good news @Caroline30 that you next on the list.
Unfortunately I have found there is often a lot of waiting around, it seems inevitable when there is a lot of work and coordination going on behind the scenes.
Please do let us know how you get on when you can.
The Blood Cancer UK support line is also there if you need it on 0808 2080 888
Look after yourself xx
The waiting around is the worst. I know this is one of the things my dad finds the hardest every time he goes in. He worries he’s been forgotten or that he’s left in places where he’ll catch and infection. I don’t have any advice I’m afraid. What you feel is totally understandable. But I wanted you to know you’re not alone in feeling it.
Iam feeling so so stupid! Got bed at 10pm last night, 6am bloods were taken, 3rd cycle of chemo started at 930am before full blood count were back. Doctor stopped chemo half way through, full blood count came back BM not recovered enough for treatment, Iam anemic asked if I had breathlessness and bleeding, yes to both in the last few days. Now to have blood and platelets transfusion to get me back to where I should be for treatment in next few days or home again until Iam well enough. I knew I wasn’t right but I have anniversary of daughter’s passing on my mind and I struggle with that and didnt really know what I else to do.
Oh @Caroline30 I know you feel stupid but that is not how I see it as I would have done the same.
It is really important to spend time honouring the anniversary of your daughters passing.
It is natural to struggle with that, be ever so kind to yourself and please do keep posting xx