[langdaleParticipant]

I had low blood pressure after sct 4 months ago so stopped my amlodipine which I have been taking for the high blood pressure but 2 months later it was back up again so have restarted and BP now normal. A couple of weeks ago had a very red rash on the inside of my right ankle but it disappeared after 3 days. Recently have occasionally got swollen ankles, especially right one.

[langdaleParticipant]

Still have neuropathy in feet nearly a year after velcade/thalidomide and found amitryptiline helped. Can walk but slow which is all you need to get round a golf course, which 4 months after SCT and no myeloma cells in my biopsy will do.

[langdaleParticipant]

I have noticed that some times my long distance vision is much better and see better without glasses but at other times it is worse but not seriously so. I am three and a half months post transplant and my bone marrow biopsy showed no myeloma cells so just have 4 weekly Zometa. I am 66, played golf today for first time since October so so far so good. Could do without the occasional lower back ache and peripheral neuropathy in  my feet. I think I have had a smooth ride compared to some and a big thanks to those consultants, doctors and nurses who looked after me so well at Dewsbury and Pinderfields Hospitals.

[langdaleParticipant]

Just had my SCT and came home 4 days ago after 18 days in hospital. Brushed teeth after every meal and gargled with stuff provided by the hospital. No real problems other than loss of appetite and diarrhoea in the last week (not helped by the poor quality food), which has now cleared up, so I think I got away lightly. Blood counts virtually back to normal although neutrophyls at 0.9 and need to be above 1 so avoiding crowded places. If I had to do it again I would. Took lots of books and a DVD player but couldn’t get wifi or phone signal but surprisingly time didn’t seem to drag. I could get the news and radio stations and telephone on the kit provided. My wife kept me supplied with clean clothes and towels but I wonder how patients get on without that backup.

[langdaleParticipant]

The peripheral neuropathy is improving with hands almost normal and feet much improved so getting much better sleep etc. I noticed my latest comments on this issue were 5th September so its about 4 months since I had my last thalidomide. I am booked in to Pinderfields Hospital at Wakefield for 1st December to commence SCT, doctors strike permitting . Sucking ice lollies is recommended so I wondered if the hospital provided these? Anyway off to Oxted in Surrey for our sons wedding this weekend so can worry about such things after then.

[langdaleParticipant]

Dear Helen and Peter
<p style=”text-align: right;”>I was diagnosed February 2015 and my GP quoted 50% survival rates adding that he thought current estimates were better and that I was as likely to die with it as from it. The Myeloma UK news sheet from a few months ago quoted Myeloma survival rates had significantly improved quoting ONS publication. Looking at Table 3 of the ONS 2013 survival rates breaks it down to age ranges as well as averages so for me at 66 my chances of surviving for more than 5 years is 63% (Ave.53%)but for 1 year is 90%. I think the words 5 years means more than 5 years. Hope this helps but it might be better to both look at the ONS web site and possibly ask the speaker to clarify which data he/she is using.</p>

[langdaleParticipant]

Dear Peter, I suppose I must be in the Stringent complete response category as there were no detectable myeloma cells in my bone marrow either. regards David.

[langdaleParticipant]

My consultant said I was in full remission with “normal” light chains and zero paraproteins, which suggests that light chains are normally encountered in blood. I have just had a stem cell harvest and waiting to go for my transplant. Hope this helps, Dave

[langdaleParticipant]

Thanks Bernard, Played 18 holes on my hilly course 2 days ago but with a buggy but it gets me out. I took 2 x10mg amitriptyline tablets last night and no drowsiness today so I think you are right, it just needs time. regards David.

[langdaleParticipant]

Thanks Mervyn, have ordered some online. I spoke to my GP today re the lack of effect of amitriptyline and his response was that there was nothing else available and this drug was very safe. he suggested doubling dose but the downside was the drowsiness. Decided to continue with the 10mg daily dose. regards dave

[langdaleParticipant]

Its 4 weeks since I stopped taking thalidomide as part of dexamethasone, velcade 4weekly cycle of 4 weeks, which has been very successful in combating the disease. The peripheral neuropathy is much the same with pins and needles, numbness, loss of strength in lower legs. My GP prescribed amitriptyline and have been taking it for 3 weeks with no effect. Walking improves it but I wake up at night and spend ages changing my position in bed so losing sleep and getting tired. If anyone knows a way of improving this situation please respond.

[langdaleParticipant]

I get the same reaction after my dex days. It lasts a few days so not really a problem unless it happens on a  Thursday when I am a quizmaster without a mic at my local pub.

[langdaleParticipant]

Hi, I am 65 and  was diagnosed with MM in February 2015, after finding a bony lump on my sternum, initially by my GP and confirmed by my consultant after x-rays and bone marrow biopsy. After 4 cycles of DVT my paraproteins dropped from 55 to 0, light chains to normal, and biopsy result showed no detectable myeloma cells, which was excellent news. Spirometer and ecg arranged to be completed by 9th September but no date yet for stem cell harvest or transplant. It would be nice to be fit for my son’s wedding on 21st November 2015 but is this likely? I have suffered the usual side effects especially peripheral neuropathy with tingling and aching legs which interferes with sleep, and golf, but am allergic to paracetamol and not allowed ibuprofen (don’t know why) so need to find an alternative. The costs of treatment were interesting so can’t really complain about the tax I have paid over the years. Good luck all, Dave

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