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I am a 37yr old diagnosed with myelodysplastic/myeloproliferative crossover syndrome in October 2013. I was due a bone marrow transplant in April but ran into severe pneumonia at the end of March so I'm home recovering and slowly gaining strength. If all goes to plan I'm pencilled for the BMT in early June. The hospital visits do not give you an insight into the personal feelings/experiences of going through a transplant. The appointments can make me feel very low and down and make me question is this all worth it. I am uncertain about how I will feel after the chemotherapy(I will be having the FLAMSA-BU regimen) and during the transplant especially when the blood counts will be very low.
Has anyone got any information/advice to share??
- Posts: 52
- Joined: 15 Apr 2010 16:56
- Location: Stoke Poges, Bucks
How are you feeling after your pneumonia? Any news on your BMT? What hospital are you being treated at? I've had 3 BMT's so I empathise with your thoughts. I think the best advice is stay positive, don't give up! You WILL get through this. My friends and family were a huge support for me, hardly a day went by when I didn't have a visitor to keep my spirits up (and I was in hospital a LONG time and not close to home either). Don't suffer in silence and make sure you report back everything to the medical team. For me, the most difficult thing was keeping my appetite. The chemo made food and even water taste awful but I had some imaginative options (Haagen Das for one!!) and the hospital was keen to encourage me too by cooking items not on the hospital menu.
Hope all goes well
RCMD 2009 at age 49
1x MUD BMT 2010
1x MUD SCT 2010
1x Haplo Transplant 2010
4 other Half Marathons, a 10 miler and a Spartan Race!
Thanks for replying. I'm doing ok after the pneumonia,managing to go for a small walk and do light exercises to build up my strength. I'm being treated at Addenbrookes hospital, Cambridge. I've got lung function tests and a bone marrow biopsy next week. If there is no significant disease progression then they will go ahead with the transplant in the 1st week of June- fingers crossed!!! I've got a very supportive family and bunch of friends so they will keep me going.
- Posts: 23
- Joined: 17 Feb 2009 19:52
I'm glad you are getting over the pneumonia.
I had my transplant nearly five years ago and it is definitely worth going through with it. Everyone reacts differently to the chemo, it made me throw up constantly, I've never been so sick in all my life,despite all the anti sickness stuff I got and as much as I hated that, it was a means to an end so I put up with it. My top tip would be to try and see the funny side of things. My goal was to laugh or smile about something everyday. A sense of humour is a must. Having supportive family and friends is also a must.
If you have a down day, don't worry about it, it's natural and the next day will be better. As Russell said, don't suffer in silence. I gather Addenbrookes is great, Jules, who has posted on this section of the forum, had her transplant there, a week before me and we are still in touch.
All the best
Thanks for taking the time to read my post. It's great to hear some positive news. It's given me some faith in the transplant.
Cheers for your top tip.
Enjoy the sunny weather to come.
- Posts: 4
- Joined: 17 Apr 2014 15:26
I am 45 years old and was diagnosed with AML in 2011. I went into remission v quickly and had been doing great but a few months ago felt unwell and went back for blood tests and after a BM biopsy they diagnosed MDS in March this year. I was told that a transplant was my only option and things were going ok as they had found a 9/10 match, but unfortunately my BM biopsy result last week showed my blast cells have increased to 20% which means the AML is back so they cant do the transplant yet. I am due to go in next week to start the first of two rounds of chemo to get me into a better remission prior to the transplant which hopefully will be July (ish).
I will be having my transplant at Addenbrookes too as my local hospital doesnt have the facilities for them so I will be interested to see how you get on Rak.
In some ways I feel more prepared this time as I know what to expect but in other ways it feels worse - as I know what to expect.
I would be interested to hear from people that have faced this more than once to see how they dealt with it. I am up for a fight again and just hope I can keep the positive energy levels up.
Sorry to hear your AML has returned. I am in sort of a similar situation - I've got my bone marrow biopsy next Tuesday the 27th.
If the blast cells % has increased they may do pre-transplant suppression chemotherapy. Hopefully not, so I can go ahead with the transplant on the 6th of June.
I've found the consultants and staff very helpful in Addenbrookes. Which consultant are you under???
I'll keep you updated once I get my BM biopsy results.
Keep the fight and positive energy levels up.
- Posts: 4
- Joined: 17 Apr 2014 15:26
Yes they are v good at Addenbrookes - my consultant is Dr Krishnamurthy, and I have a game consultant at my local hospital too.
I have stopped work this week so am enjoying a few days of freedom, meeting up with friends and getting organised
Sorry haven't been in touch, the wifi in Addenbrookes is very hit and miss.
Anyway, thankfully my BM biopsy didn't show any increase in the blast cells so I came in on Friday the
6th of June ready for my transplant.
Things never go to plan as I had a spike in temperature that evening( infection poss due to central line) so started on antibiotics and transplant kept on hold. Central line removed on Saturday and had a CT scan which revealed significant increase in spleen and liver size.
My consultant said the bulk of the disease has increased so recommended pre-transplant suppression chemo treatment.
So now I'm on day 8 of chemo - not feeling too bad, a bit tired and drowsy. Appetite still ok. Got 2 more days of chemo then a 2-3
Week recovery period. If there are no further hiccups then they will start the conditioning regime for 11 days before cell infusion.
If there is one thing that I've learnt from the last few weeks is to take each day at a time and break the treatment into small chunks rather than looking at the whole picture.
The World Cup is keeping me occupied so the hospital stay so far hasn't been too bad. The staff at the transplant ward are brilliant.
Maggie how you getting on with your chemo treatment??
- Posts: 75
- Joined: 04 Mar 2013 13:01
- Location: South East England
I have just been reading your post. I just wanted to say say I hope you are getting on Ok and I will be thinking of you. I don't have MDS but I did chemo myself five years ago so I know a little of what you are going through.
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
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