[peggyParticipant]

Hi Calray,

I too had problems with ‘useless’legs but I’d like to give a bit of history first.

My diagnosis of myeloma occurred in a very roundabout way. I’d suffered increasingly severe migraines and noticed that I had difficulty raising my right leg so that I’d have to pull it up with my arms in order to cross a stile. It was discovered that my blood pressure was extemely high and that I had impaired kidney function. Eventually myeloma was diagnosed.

I was prescibed courses of Rev , dex and cyclophosphamide, during which my walking stability became far weaker and occasionally resorted to using a wheelchair or more frequently walking sticks. I had my SCT in Dec 2012. Recovery took far longer than I had anticipated and until Aug 2014 I would only have said that I felt so-so.(Not bad note but not yet as I well as I had hoped for).

I kept on referring to my leg problems but no one paid much attention and didn’t think it was related to the myeloma.I was sent to have neurological tests but these came back negative despite annual appointments with the nerologist.

Suddenly in August this year I felt as if the fog had lifted and last week I discovered that I could also raise my leg normally. Just like that.

So whatever anyone says, and whether it is related to myeloma or not, just hang in there: it may yet get better and the doctors ,though they know a lot , do not know eveything about this disease.

All the best in your (husbands) journey
Peggy

[peggyParticipant]

Hi Susie,

I too suffered from cramps. I mentioned it to my consultant who prescribed quinine tablets. Alternatively, it was suggested that if I didn’t want to take another medication I could drink a lot of tonic water as it too contains quinine – but she couln’t quantify what a lot was ….just to drink like a fish. I took the tablets and didn’t look back.

All the best,
Peggy

[peggyParticipant]

Hello Eve,
Sorry to hear about Slim’s predicament.
I’ve been trying to recollect my treatment, it was some time ago now. I believe I was diagnosed approx June 2011 and went straight to RCD on the myeloma X1 trial. After quite a few major hiccups,and receiving six doses of Velcade to get my light chain readings down, I proceeded to my SCT. I don’t think that any time during the whole of these proceedings that my platelets were ever over 20, a lot of the time they hoverered around 10 and even dropped to as low as 1 I think. When receiving the Velcade I had a platelet transfusion before the Velcade was administered. In my situation they continued despite the low readings but then we know that all people and cases are very different.
A year after my SCT and in complete remission my platelets have just reached the all time high of low 30’s.
I hope that Slim’s treatment is able to continue soon if it has not already restarted.
All the best on your myeloma journey,
Peggy

[peggyParticipant]

No suggestions concerning the appetite..mine came back fairly quickly and I've regained nearly all the weight that I lost. However, regarding the lack of saliva when I was in hospital I was given a spray to replace the missing saliva. I only needed it temporarily but maybe you could get a prescription for something similar from your doctor. I most certainly couldn't have eaten without its help.

All the best,
Peggy

[peggyParticipant]

My platelets went down to 2……….. but I,ve just read that I,,ve been, beaten, by Sue whose levels fell to just 1!
All the best
Peggy

[peggyParticipant]

I too have light chaiins…….in fact aI thhink that there are a fair number of us on this forum. I TOO had RCD but am onnly just recovering from my SCT which I had over Xmas ….truth be told I,m still feeling pretty rough. So neither have i reached the point of randomizattion either.

All the best meanwhile,

Peggy

[peggyParticipant]

brilliant
result
…well doone
peggy

[peggyParticipant]

(Hi Lizzy,

I too was one of those unfortunate ones to have an allergic reaction to Allopurinol. The hospital wasn,t at first sure whether it was the Allopurinol or the Revlimid but I too took the risk of taking Revlimid again and luckily i had no further reactions. But I was hospitalised for over three weeks, had severe swelling of face body and legs that I was unable to walk and I too shed my entire skin in strips..(Another antibiotic that I was given whilst in hospital was also implicated beforeI frighten anyone from taking Allopurinol)

I didcontinue with my RCD regime without Allopurinol and it did its job. After being randomised to velcade I am now in remission and about to undergo sct.

As others have stated there are other treatment routes and I KEEP MY fingers crossed that one of them is effective for your mother

Best wishes,
Peggy

[peggyParticipant]

Hi all,

Yes, I,ve got the answer. Dai, ther,s to be no chemo-priming. But I have got the GCsF injections. I had thought that I would have more hospital appointments and more tests but I was simply handed eight syringes to inject myself with starting on the day four days before the stem cell collection. That,s no problem but is that how it is usually done?

Peggy

[peggyParticipant]

Thanks Eve And Helen for your responses…

Roll on tomorrow when I will find out what,s happening. It,s school holidays this week so we,re going away for a few days and the following week I have a few non-alterable (non-medical ) appointments so no time to fit in any further medical tests… Tomorrow will reveal all.

Peggy

[peggyParticipant]

I'm just started cycle 5 of VCD. I noticed my hair start thinning on cycle 2. By cycle 3 it was coming out in handfuls, usually a day or two after taking the cyclophosphamide component of the VCD. On Tuesday I took my last cyclophos and guess what is happening this morning?

I used to have longish hair but now it's dead short especially at the back. My hair started falling out at the back and when I caught sight of myself in a mirror it looked like a short bob with a 3 inch long rat's tail projecting not quite 3/4 round the back of my head. It made me laugh but it looked so silly that I had to cut it off. From the front it still looks okish but the back is continually getting shorter and shorter probably a number 1 (not sure of men's categories) with a thin curtain of hair overhang.

I'm on the list now to get a wig however long that takes.

Peggy

[peggyParticipant]

Hi Vicki, I hope all goes well for Colin over the next few weeks. I'm still keeping my fingers crossed that I'll be
following the same path in a few weeks time….. (last time I saw my consultant a few weeks ago I was prepared to be told that I could go in for the sct and then being on the Myeloma X1 trial I was 'randomised' to have Velcade intravenous treatment first. I decided to stay with the trial and go with the Velcade and am glad that I toook the risk (I have a tendency for multiple drug allergies) as I feel better than I have done for years).

Ali, is your mum taking the antibiotic cyprofloxacin? It,'s an AB that I tolerate and says that you should not take milk. However when I was in hosp one time I drank my normal milky tea and had my usual milky cereal without being told anything to the contrary and without suffering any consequences….. but at home I am a religious follower of instructions

Love to all, Peggy

[peggyParticipant]

Ah ,Kinder Scout Downfall. I have memories of climbing up the frozen waterfall at full moon with ice axe and crampons….my only true ice climb, Happy days,

Peggy

[peggyParticipant]

Hi all,

I too had that dreaded allopurinol reaction………. started off with a rash and then my skin started peeling off all over. Unfortunately I was given an antibiotic which itseemsthat I was also allergic to and ended up in hospital for over three weeks. So no allopurinol, no meropenem, no erythromycin, no trimethoprim and no cyclosporins for me. Woops, I had better not get ill again!!!

Peggy

[peggyParticipant]

But it's hard to please everybody. I want to see/ hear the Bourneville carillon but it's only on a Saturday and that would mean my daughter missing her Riding for the Disabled lesson (she lives for animals) but I mentioned it and she seems to accept that we put ourselves out to get there almost every Sat. so I think that I could swing it once.

I was wondering about the cool bag but would it keep the injections cool enough? and for long enough… I suppose I could ask the nurse. Thanks anyway.

Marion

[Author]

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