[alpenatorParticipant]

I am now in my 5th month of remission after an initial set of CTDa, but still have a number of side effects that may be of some interest to others.
I still get a lot of pain in my legs and lower back for which I take a low dose of Zomorph, after the initial Oramorph made me very nauseous. However the Zomorph ‘zonks’ me out in a morning (don’t understand why people take drugs from choice for this effect!)
A tip for those suffering from Nausea – try Gin Gin Chewy Ginger; it’s very good.
The PN in my feet is still quite bad; painful and ‘unattached’ feeling (someone else has described it as walking in painful sponges.)
I have very cold hands which I have read elsewhere is probably also PN.
All in all, whislt not feeling really ill, I do not look forward to feeling as I do for the rest of my life; I feel as if I have lost ‘me.’
Am now awaiting test results on a possible Sarcoma in my back, which I think is unrelated to the MM, but which I could do without.

[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

[rebeccaRParticipant]

Hi carol, 3 months after transplant all my drugs stopped – tho it was only acyclovir and co-triximole (feel like a poor relation now!). Although I have not yet spoken to my consultant about flying – waiting for final results next week I was planning to fly in June (6 months post) pre-school hols price hike and just after GCSEs. I always thought the guidance was don’t fly for 6 months? how long does your consultant say? – they’re obviously more enlightened/cutting edge if you get “just in case” drugs for a year. At my last consult my Doc said I would have to take antibiotics if I got a temperature for 6 – 8 months only after transplant. Now cpnfused.
PS Not particularly relishing going abroad so soon but I think life goes on – take a (scary)leap back into it – don’t want to deprive others of “normality”. Would love to compare your understanding of post transplant care as I don’t feel very informed at all.

Rebecca

[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

[finnParticipant]

After my transplant I was on acyclovir only, no antibiotics unless I got a temperature. Apparently I should take antivirals for about a year.  Flying was allowed 6 months post SCT, at least in Europe.

[rebeccaRParticipant]

Thanks Carol and Finn – feel a bit better now finn – Carol think you’re getting star treatment! Carol – getting my results next week only had 0.03% in bone marrow pre transplant but lambda wouldn’t move below around 60 I think – Doc won’t discuss results until next week but know light chains haven’t moved. I’m rather strange had only 1120 lambda at diagnosis (late diagnosis) but kidneys at 5% and I’ve only recovered about 26 -28 gfr now (about half a kidney). The transplant hasn’t altered my kidneys so believe light chains are unmoved – I only have to have a slight drop in chains to see an increase in kidney function. At SCT at another hospital I discovered I had a 14:16 translocation which on the myeloma beacon site is normally associated with kidney damage not bone damage. My consultant – who is the most lovely man – had told me previously I didn’t have any translocations or deletions! I think he was right to withhold this as I was struggling for months to get beyond 16% gfr and obviously worried about MM/kidneys – which would get me first! to have told me would have caused further anxiety and may have pushed me over the edge – I can’t influence my genetics so it was best I didn’t know I think. Anyway, I know he doesn’t like to be the bearer of bad news but will go out of his way to share any good news so I believe the SCT has not altered anything and that I will still have minimal residual disease and a ratio out of kilter- I’m considering myself to be a work in progress. C’est la vie.

[Author]

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