[CarolsymonsParticipant]

Oh Mandy what huge decisions you are being forced to make! If it would reassure you then seek another opinion. Not everyone suffers for months after transplant but I guess your consultant knows your situation better than anyone else. Sending strong positivity your way -hoping you make the best decision for you and your family. Have you thought about seeing or seen a counsellor? It might help to discuss your feelings with someone outside of the family circle.

Carol

[CarolsymonsParticipant]

Hi Rebecca

Well that’s just the info re drugs that I need…no way am I taking antibiotics for a year. And you didn’t even have Septrim! Consultant says that is to prevent pneumonia. I wanted to fly to Ireland next week (11 weeks after transplant) and to Bosnia in May or June, but am definitely returning to live in Australia as soon as the 6 months is up in July. After transplant I had 2 fortnightly visits to consultant, with blood tests, now monthly with a biopsy scheduled for the next visit at 100 days (29 April). How are your paraprotein and light chain ratio numbers after transplant?

Carol

[CarolsymonsParticipant]

Hi
I understand how you feel about losing “me.” I read of other sufferers talking about their new “normal” but I just want to be normal like I was before diagnosis and all these bloody toxic drugs. Sadly I don’t think that is going to eventuate. I also have neuropathy in my toes which makes walking feel strange, but luckily no other major pain. I went back to work this week (10 weeks after transplant) on a phased return, but can’t seem to motivate myself to do anything much…not even go out walking. Mind you it would help if London would throw a few more blue sky days my way! I hate taking drugs, but the consultant tells me I have to take penicillin and septrim for 12 months after transplant…so frustrating as I just want to be drug free. I also want to travel by air but he assures me that I will most likely die if I dare to board a plane! I am sure he is exaggerating! I don’t understand why he tells me I still have no immunity when my bloods are all normal and cancer (so far) is in remission. While I should be happy as I got through the transplant and recovery with no complications, I just cannot seem to find much joy in living right now.

Carol

[CarolsymonsParticipant]

I had the same problems signing in a week or so ago. I gave up that night, tried the next day and it worked. I wonder why it randomly signs you out?

Carol

[CarolsymonsParticipant]

Mandy

I think the blogger, Jet, has been through this double transplant treatment with an allo for the second transplant and she is also younger. Although she is suffering some problems now with graft versus host disease from the allo, she seems to lead quite a full life. Whatever we choose in this battle is a gamble, but as you say at 50 years old maybe the gamble of a double transplant may pay off. Contact Jet or at least read her blog….may help with your decision making.

Carol

[CarolsymonsParticipant]

Hi Andrea

I concur with Tom. I had a broken collarbone, so was off work at diagnosis but as I progressed with the CDT there was no way I could continue working. For the last 2 cycles I really just moved from bed to chair and back again. In fact I think I suffered more from side effects during the CDT, than after the transplant. So don’t push yourself…if you need time off work then take it. Your health is your priority. I am just 10 weeks post transplant and returned to work yesterday (on a phased return). I also went back for 6 weeks about a month after CDT finished while I was doing stem cell collection and waiting for transplant.

Carol

[CarolsymonsParticipant]

Well done Tom! You are an inspiration.

Carol

[CarolsymonsParticipant]

Hi John

Be prepared…things will get worse before they improve, but it is doable. Not sure about the Velcade as well as all the other drugs they hit you with. They will give you lots of anti nausea medication too, both orally and through your IV line. I had to have some potassium during the days I was unable to eat and blood (yuk!) and platelets at various times while I waited for the stem cells to do their thing. I am just past 2 months after transplant and return to work tomorrow on a phased return. I am looking forward to seeing my staff again…..it is boring being at home all the time! Never thought I would say that!

Carol

[CarolsymonsParticipant]

Hi Keith

Be very proud. They only need 2 million/kg for a transplant, so I reckon you have far more than you need. This is an excellent result. I still have to claim the record though, as I produced 15 million per kg, enough for 7 transplants! For my first transplant 2 months ago they returned 5 million cells/ kg and as I weigh 90kg that’s a helluva lot of cells! I had an easy time of the transplant and recovery, from what I have read about others’ experiences, so maybe it is better to have plenty of cells returned. I did ask this question of the consultant but don’t remember getting an answer in the affirmative. Nevertheless I am at zero paraprotein and normal light chain ratio after the transplant, so something worked in my favour. Fingers crossed I maintain these numbers.

Carol

[CarolsymonsParticipant]

Hi Jean

Progress is being made thank goodness. Both of you keep fighting, you will get through this.

Carol

[CarolsymonsParticipant]

Hi again

I read your earlier posts and can feel the fear you express about SCT. But honestly the CDT side effects were (at least for me) worse than the transplant. For about the last 6 weeks of the 18 week CDT course, I could barely function. But we all just do what we can to get through whatever we have to do to survive. I have a saying on my Facebook page I found somewhere but it is so true….”You never know how strong you are until being strong is the only choice you have.” Dry your tears….you have lots to live for and somehow will find the strength to get through to remission and hopefully a better quality of life. All my family…mum, 3 sisters, 4 kids and 4 grand kids are all in Austalia and if all goes to plan I will be back home by mid July……fingers crossed my remission holds this time……

Carol

[CarolsymonsParticipant]

Hi
I know it is terrible! I used to feel sorry for my poor husband who couldn’t do or say anything right! Doctor gave me “come down days” taking 10, 5 then 2 steroids after the high dose. Mainly because my heart slowed own drastically on the withdrawal. But the lower doses helped with the withdrawal symptoms. So glad I am off all treatment at the moment (9 weeks post transplant)

Carol

[CarolsymonsParticipant]

Thanks for the photos Helen…there’s hope for me yet…but still no growth after 9 weeks! Depressing!

Carol

[CarolsymonsParticipant]

Hi John

Enjoy your food while you can….soon you will be revolted by the sight of anything related to food! Having said that, although I was unable to eat for a few days I still didn’t lose weight! I did lose a bit when I came home, but have put it all back on! I do hear of other people losing weight however. Last blood test 3 weeks ago has me with a normal light chain ratio and no paraprotein detected, so I am still a happy bunny 2 months after transplant. Hope your results will be the same!

Carol

[CarolsymonsParticipant]

Hi

It seems the standard treatment in the UK is 6 cycles at least. I had no paraprotein detectable after 3 cycles, but my light chain ratio was still abnormal, so had to complete the 6 cycles. Do you know your husband’s light chain readings? Even then the ratio never got to normal, but I had the transplant anyway. Bone marrow biopsy showed 4% at that stage. 5 weeks post transplant -still mo paraprotein and normal light chain ratio at last…..biopsy will be repeated at the 100 day mark post transplant. Not sure what other tests will be done then. So far so good….

Carol

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