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New to the forum
Hi there all,
My name is Mandy, I am new to the forum and am joining really on behalf of my brother. He is a 52 year old who has AML flt 3 mutation, he has had 3 runs of chemo at our local hospital and he is soon to have a stem cell transplant at the QE hospital in April.
If there is anyone out there with advice or maybe some else who has a family member with similar diagnosis we would appreciate your input.
Also I would just like to say that my mom and myself went to the Anthony Nolan day in Birmingham last Friday and we were very grateful of all the help and support that we received, it was well worth attending.
Many Thanks
Mandy
My name is Mandy, I am new to the forum and am joining really on behalf of my brother. He is a 52 year old who has AML flt 3 mutation, he has had 3 runs of chemo at our local hospital and he is soon to have a stem cell transplant at the QE hospital in April.
If there is anyone out there with advice or maybe some else who has a family member with similar diagnosis we would appreciate your input.
Also I would just like to say that my mom and myself went to the Anthony Nolan day in Birmingham last Friday and we were very grateful of all the help and support that we received, it was well worth attending.
Many Thanks
Mandy
Comments
I'm one of the online community champions and was also at the education day on Friday. It was good to meet you and your mum and I hope you found the day beneficial. Even as an 'old hand' at all of this there was still new things that I learned so it was well worth attending.
I know we have many members on the forum that have been treated for AML and hopefully someone has experience of the mutation you mention.
I guess the process for the transplant though will be common to us all, no matter what we are being treated for so once your brothers chemo is complete he will follow the same procedures we have all experienced so we can all help with advice and tips.
If you have any questions about what is going on or anything you think may be strange that is happening to your brother you my find that someone has already posted about it and never be afraid to ask any questions you might have. We're all here to help and support each other.
Best wishes to your brother, you and your mum.
Steve
Yes it was a beneficial day for us to be able to speak to people who were 'old hand' and we did pick up things we hadn't heard before so it all helps in this long road ahead!
I must just mention how great Ciara and Hayley were too, so much knowledge and so professional but also with a kind,warm and caring manner which put us well at ease as first timers!
Also I understand what your saying regards the transplant process being the same and will be very appreciative of any input along the way.
Thanks so much for your time Steve and all the best to you too
Mandy
Really great to see you here on the Forum. Keep us updated on how your brother is getting on and i know you'll get some amazing peer support on here. Thanks for your kind words about the Education Day too - we love doing them and I'm glad you and your mum found it helpful.
Chiara
I will keep you posted on how he goes on, we know it's a long road ahead but we are hoping all issues he encounters will be able to be overcome eventually.
We really did get a lot from the Education Day and really appreciated the friendly warm welcome from yourselves. I would recommend it to others in the future as it was a worthwhile event.
Many thanks
Mandy
Well it's been a bit of a rocky road so far for my brother he was doing so well the week and half in hospital leading up to his transplant and then everything changed as his temperature spiked on Good Friday and they have said he had a brain seizure, which basically ended up with him being rushed into critical care at the hospital where he remained until Tuesday (day before his transplant). Amazingly his transplant still went ahead (and like we had been told was quite a low key event ) which only took 40 minutes in his case. So here we are at Day 2 he is doing surprisingly fine generally so far however we know we have a long way to go yet! Hopefully no more visits to critical care please!!
Mandy
The transplant itself is surprisingly simple and no more dramatic than having a transfusion. Considering how life changing it is it's so straightforward. We all know what he is going through and the path he has yet to follow but so many of us here are testament to the success of the process and we are with you and your brother every step of the way.
Please keep us posted and come back for support as and when you need it.
All the best,
Steve
He's doing well considering what he has been through so we will focus on the steps forwards and support him along the way.
Just a quick question did anyone suffer headaches that came on sudden especially when medication was administered?
Thanks again
Mandy
Luckily my brothers headaches seem to be subsiding slowly so let's hope it will continue! He looked a little brighter today so that's great to see even though early days.
Onwards and upwards hopefully!
Thanks so much to Anthony Nolan
I seem to remember suffering headaches from time to time. Part of my treatment was having intrathecal chemotherapy, which was injected into my spinal cord. That usually gave me a headache, largely because it was injected into my central nervous system.
I also had headaches sometime when I had transfusions. He's probably feeling quite low at the moment anyway so headaches may be something he will suffer from, possibly due to fatigue? I found that keeping hydrated with water helped.
Hope he's doing OK and that his recovery is smooth.
Steve
That's the headaches seemed to have subsided some what now thank goodness.
I do think you are correct that it could be all part of the fatigue he is experiencing and he is trying to keep hydrated and eating as much as he can to keep his strength up to aid his recovery.
He is doing ok thanks Steve so slowly day by day we move forwards!
Thanks again
Mandy
I am sorry that your brother has had such a difficult start to the transplant but I am glad he is beginning to recover. The headaches could be a result of his infection and/or medications. Some of the medications that he will be on can cause headaches but his transplant team will be aware of this. It is reassuring that he is feeling better and they are subsiding.
Fatigue is common especially after a stay in critical care so again this is normal. He is doing all the right things in ensuring he is eating and drinking well. This might take some time to fully improve but as long as he carries on with what he is doing and managing a small amount of exercise he should continue to make progress.
I am sure you and your mum are both doing an amazing job in supporting him. Please keep us updated on his progress.
BW
Hayley
My brother is doing ok generally and as we are aware things will be a slow pace of recovery but like you say the eating well and trying to keep moving as much as he can is a very important part of it all.
On a good note his headaches have improved and there has been talk of him maybe coming out of hospital towards the end of next week so we will hope that happens!
Thank you for your support
Mandy
My brother is doing quite well generally so all heading in the right direction! We were just wondering as he tries to get out for short walks as much as possible is there anyone out there who may have had any problems with sunlight and how it has affected them immediately after sct and longer term?
We are heading towards day 30 so it is still very early days.
Thanks
Mandy
Thanks for the update. Its great that you brother is able to get up and about and I assume you are being cautious about what he is exposed to.
I recall being advised to avoid too much sun after my transplant as I think the treatment has an effect that makes patients skin more sensitive. I was advised to use a high factor sun cream if I was out in the sun. If anything go on the side of caution.
The issues with my skin were longer term because I got skin GvHD and being exposed to the sun triggered it, so I had to be extra cautious.
All the best,
Steve
Fantastic to hear about your brother's progress; sounds like he is doing well.
My husband is 2.5years post-transplant and his skin is incredibly sensitive to sunlight. We had been told to expect that anyway but we have been led to believe it's particularly bad because he's still on a drug called Voriconazole. I'm not sure if this is one your brother uses but it has had a massive impact on my husband's sensitivity.
He wears full sunblock, a hat and gloves now if he's driving on a sunny day and when he is outside for more than a short period of time. Gloves especially as his hands have burnt a few times already this year. And full clothing. It may be worth having some hat/gloves/sun block on hand just in case your brother is the same?
Bit of a shock to the system as my husband has always been a huge sun-lover but he will be keeping it covered again this summer (I have given up the sun in solidarity....and am trying to convince him to join me for a spray tan instead) (He's not convinced).
Hope the walk goes well and your brother continues to improve.
Best wishes
My brother has never really been a sun worshiper kind of guy which is a bonus.
So basically it's take the precautions as much as possible especially in early days though he isn't in the drug mentioned but he was wondering if there comes a time when the skin becomes more tolerant (for want of a better word) to the sun?
Thanks so much
Mandy
Now that it's been mentioned I think the main risk was whilst I was on Ciclosporine which made my skin more sensitive to sunlight. Now that I've been off it a while I'm less cautious out in the sun, though I do take precautions if I'm going to be in strong sunlight for any length of time.
Steve
Talking of ciclosporine is there any connection with immune suppression drugs reduction and stage of recovery or does it not play a part at all as my brother has now been reduced to 100mg twice a day and on day 35 ? Basically is that a good sign or nothing to get too excited about because it's very normal for all at this stage?
Does anyone have any views regarding this please?
Thanks
Mandy
I think you can only trust your doctors on this. My cyclosporine was reduced quickly after transplant as they were trying to get me on a trial and around Day 50 I ended up with bad acute GvHD which they think was possibly not helped by the quick reduction in cyclosporine. Post-transplant, everything is like walking a tightrope, trying to get the balance right. Generally, coming off cyclosporine is a good thing but coming off it too quickly can be bad, as in my experience. So I would encorage you to talk to your doctors, ask questions specifically about your brother and trust in them that they are making the right decisions to help your brother navigate this period in the best possible way.
Wishing you all the very best,
Greg
I think reduction of Ciclosporine is a fine balancing act but they do try to wean you off it as soon as they can. I can't remember now how quickly mine reduced but I seem to recall that it reduced fairly quickly to start with but then slowed down, particularly as my GvHD developed, which delayed me coming off Ciclosporine for a long time afterwards.
I wouldn't worry too much about the Ciclosporine as that is there as a protection, probably with a multitude of other drugs your brother is taking whilst his systems get back up to speed. The main things that are a sign of his recovery will be his counts for white and red blood cells, which indicates the new bone marrow is starting to do its job.
I can't remember exactly when but my medical team told me that my chimerism had got to 100% donor which is the ultimate goal, meaning that my marrow was completely new. As a side issue my blood group also changed as that from my donor was different to my original blood group. Again, once that happened it was a sign that my graft had taken over operation of my systems.
Regards,
Steve
It is really beneficial to hear your experiences. We are aware all are individual and the course along the road to recovery can change in various ways many times.
However we appreciate you valuable input and I will be relaying to brother your points and how it is important to ask his team on reasons and explanations for his personal blood readings etc..
Many Thanks
Mandy
I am glad that your brother is doing well. The advice that has been given here is brilliant and I just would like to add that sometimes the immunosuppression is reduced quickly to induce graft versus host disease. Remember this is a good thing but like Greg has said it needs to be balanced and treated appropriately. The reason GvHD is a good thing is because it then causes graft versus leukaemia which means that is should help prevent any relapse. If your brother does get any GvHD and it causes him problems they might slow down the weaning and take things a bit more slowly. So he needs to monitor for any skin changes, rashes, itchiness and any diarrhoea. Report anything to his team and they will decide what to do.
In terms of his skin, he will be more sensitive when he is on cyclosporine but also generally. His skin will be very dry irrespective of GvH and he will be more sensitive to temperature changes for a while. This summer he needs to be very careful in the sun and in the long term he can be more relaxed but should always wear a factor 50 and protect himself with a hat etc.
Keep us updated with his progress
Hayley
Thanks so much for your advice too it's really helpful and although my brother is very knowledged about all aspects of his condition and treatment it does indeed benefit him to be able to contact real people and professionals so thanks for taking the time to write as we know how busy you must be, really appreciate it.
While I'm writing he has asked me to enquire about fitness levels if anyone is able to help?
Basically my brother is a professional golfer and has always kept extremely fit and flexible generally but obviously after treatment etc he is now restricted to just going for walks and very basic stretches, in fact only yesterday when out on one of his walks did think about breaking out into a jog, however he literally couldn't because of restricted movement in his legs. My theory is that it is still very early days and he has to be able to accept that it will be a slow process but he would like me to ask if there are any other sporting people that have had transplant and treatment who maybe have found that anything in particular has helped them get to the level of fitness that they were at prior to diagnosis?
Kind regards
Mandy
for all of us it does take quite a bit of time to regain our fitness, though those that were fitter and more active beforehand might find it easier to get fit again due to being more disciplined in being active, but I would urge caution in making sure that your brother doesn't try to overdo it.
There's a good thread running at the moment over fitness and fatigue which I've shared the link to below. To me it sounds like your brother may be a little ambitious to be thinking about jogging at the moment as I didn't even have the strength carry me up the stairs, let alone run for some time afterwards!
I lost a lot of muscle from my legs having being in bed for so long and that combined with overall fatigue meant I struggled. Once I did get going I found that walking the dog twice a day every day helped build up the strength in my legs again and regain some fitness but I can't emphasis how long it does take to get back to 'normal'.
Have a look at the following thread which has some useful discussion:
https://www.anthonynolan.org/patients-and-families/anthony-nolan-patients-families-forum#/discussion/279/coping-with-tiredness
It's literally a case of having to learn to walk (again) before you can run!
Steve
It's nice to e-meet you
It's great to hear that your brother is doing well!
I am 5 and half years post Bone Marrow transplant and can totally relate to the fitness query so I just wanted to share my experience with you.
Before my treatment, like your brother, I enjoyed hobbies and keeping fit - and never actually thought the treatment would stop me from doing these things - but boy did I hit a brick wall after my treatment...
Like Steve has already said, it is literally like taking baby steps... I remember my first outing was with my dad, walking around Regents Park in London, and the very slow (but long) walk wiped me out for days! I remember walking up a few steps was a mission and would always get so out of breath. This was extremely frustrating for me as I was meant to be a fit and healthy 24 year old!
But after a little patience and determination to feel 'normal' again (both mentally and physically) I decided to sign up to a 5k run almost 2 years after my transplant, in the same park as where I had my first long walk after my treatment - Regents Park! It took a lot of training, but I managed to complete it
Just on a side note however, it is so important your brother listens to his body and doesn't over do it - it does take time and can be very frustrating, but like mine, your brother's baby steps will definitely progress and get easier... and I'm sure his golf clubs will be back in his hands before he knows it!
All the best,
Nichola x
You both have reinforced what I have thought about having to take it slowly(which I'm sure is frustrating for my brother) and listen to your own body as over doing it won't help long term and actually may set him back.
I'm sure he will get back to his level of fitness eventually but I do also understand his mind wanting to try to push forwards(albeit a little too early being day 37!)
I admire your strength Nichola congratulations on the London Marathon!!
Also to you Steve pushing yourself with your mountain climbing too!
Well done both and thanks again for taking the time to respond.
Kind regards
Mandy
My brother is still doing well Day 55 today and no major issues to date so all heading in the right direction so far!
We were just wondering if anyone out there has views on when they began to feel more comfortable about getting back into society and being around general public again?
Also did anyone have any car insurance issues? Is there a certain amount of time to wait before driving again?
Many Thanks
Mandy
Really pleased to hear the update about your brother - long may it continue!
Re: getting out and about again, probably best to check with your brother's medical team to get a view on your brother's specific position. For me, since transplant I took a common sense approach (and still do!). I had poor blood counts for about 8 months after transplant, so in that period I was very careful. After that, I relaxed a little but I guess I am still cautious and catch myself naturally avoiding large crowds and particularly anyone with an infection. But you can't live your life wrapped in cotton wool either. I have 3 children under 10 so I could have spent all last winter in my bedroom but I reasoned that wasn't going to do myself any good either. I guess my motto is look after yourself as best you can.
Re: driving, I actually never stopped. My consultant said I was not barred from driving but obviously I should not do it if I felt unwell. I also felt I had a responsibility to other road users. As long as I felt I wasn't a danger to others, I went for it.
Hope this helps in some way.
Cheers,
Greg
That's much appreciated again thank you. It sounds like you have to use common sense with situations and rely on the team to offer advice regarding individual circumstances.
My brothers work involves being in contact with quite a large number of the general public so I think he needs to air on the side of caution for now maybe.
He has only had a short spell away from driving (whilst having conditioning and transplant )but it was just something that the insurance man said to check with medical team also which we hadn't thought that would be a problem, so wondered if anyone else had?
Its good to hear your recovery is going well too Greg
All the best
Mandy
Thank you for the update, it's so great to hear he's doing so well. Onwards and upwards!
I agree with Greg - in terms with getting out and about, everyone's recovery is different so may be best to double check what his transplant team say... however it might sound cheesy but I found the best advise actually came within! Only your brother will be able to hear what he's body is telling him... if he gets the urge to venture out, GO FOR IT! But just be careful and take it easy. Oh and I never left the house without antibac gel... still don't
You can never be too careful but as soon as his blood count shows the 'good soldiers' are alive and kicking (which by the sounds of it, they already are) then it's good to put them to practice I say
For me, I was nervous more than anything - my appearance had changed a lot, and my confidence was knocked hugely. I had my transplant in the July, and my first big social outing was for a friends birthday in the Jan! So essentially it took me 7 months to socialise comfortably in a big crowd. In those 7 months however I did do little trips with my partner and mum to busy shopping centres etc which helped me gain my confidence a little before the big social events. I found it nerve racking but I took my time and these little outings helped me going forward!
But as I said previously, everyone is different, and your brother may find it easier
I then went back to work (part time) in the Feb, and having a bit of routine back in my life and familiar faces around me helped immensely
Re driving, again it was about how I felt and whether or not I felt ready. I think it only took me a couple of months until I was back on the road - the fact I could go 'out' but hide in my car, helped me feel I had my independence back but without feeling nervous about seeing other people...(if that makes sense?!) that got better in time of course, but driving for me was my first bit of luxury and I enjoyed having that bit of control again
I don't believe there's any special insurance he needs to get... but I do remember I was entitled to a blue badge, meaning I could park anywhere! Really helped with energy levels, as the little shopping trips were more tiring than i'd remembered, so being able to park near the entrance in the 'disabled' bays, was very convenient!
I didn't like the thought of being under the 'disabled' category, as I wasn't disabled at all (that was just me being stubborn) - but the blue badge definitely had its benefits, so may be worth looking in to for your brother!
I hope this helps and I wish your brother all the best!
Nichola