[ali49Participant]

That’s fantastic news David, makes us all feel more positive.
Alison x

[ali49Participant]

Hi David
did your consultant consider and rule out a DVT (thrombosis)? If not and it’s still swollen and tender I would get a medical opinion promptly as they can be nasty and like Ann said easily dealt with.

Kind regards
Alison

[ali49Participant]

That's interesting, I was being treated for acid reflux as well, that was after a month on peppermint capsules in case it was irritable bowel syndrome! I only had a blood test after I found to be anaemic when I went to give blood.
Hope you have lots of great days in sunny Cornwall, you have such a beautiful coatline there.
Alison

[ali49Participant]

Hi Mal and Bruce
I was interested to read your posts re home dialysis. I was on dialysis for awhile when I was first diagosed and the staff were training people in readiness for home dialysis and I thought that was a brilliant plan.I
Fortunately my kidneys have recovered sufficiently that I no longer need dialysis but I am aware that they may not last forever. I use renal patient view too!
I hope you continue to stay well
Best wishes Alison

[ali49Participant]

Hi Bev
let me add my welcome to everyone elses:-)
I found this site really helpful when I plucked up the courage to look at it. I made my brother-in-law check it out first in case it was full of doom and gloom!! I found it was really positive and encouraging.
I am 51 and have been through some chemo and a stem cell transplant a year ago. I am now back at work and feeling really well.
It's like being thrown in a rushing river but after a while you will find you can swim!
Best wishes
Alison

[ali49Participant]

Hi Rebecca,
before my SCT my creatinine was averaging 400 and my urea around 20. I would say it has improved since my transplant. I did not have dialysis during the SCT but they were very careful to give me lots of IV fluids and a modified dose of Melphalan.
I think the important thing is not to feel rushed into a decision.:-S Do you see a renal specialist and what does s/he say? Have lots of discussions with your heamatologist. Yes the mortality risk is higher but it's not high. I was more worried about ending up on dialysis. The risk is more from the damamge that a severe infection might do to your kidneys than the Melphalan (or that's what I understood) and at the first sign of a temperature they had me on IV antibiotics.
love
Alison

[ali49Participant]

HI Jackie
I'm sorry that your Mum has had this diagnosis and it's such a shock for the whole family.
I was diagnosed two years ago and was on dialysis three times a week for a month. My blood levels improved by 50% and I was able to stop dialysis and although I have poor kidney function it's enough to get by on so that's ok! Hopefully your Mum will be able to stop dialysis eventually and I'm sure they will get her drugs right too. Poor kidney function means that drugs can be slower to leave the body than normal so become more toxic. On the other hand dialysis can clean the blood so well that some drugs are removed before they have a chance to work! So even the doctors have to have time to work out the best regime for your Mum.
I hope she will be soon feeling more positive and that all goes well
Alison

[ali49Participant]

Hello Rebecca,
I was diagnosed with IgG Lambda myeloma two years ago and my kidney function was extremely poor – creatinine 1000. I joined the Eulite trial and had extended dialysis (which I was able to stop after a month) and Velcade. My creatinie levels came down to about 500 and my renal consultant felt it was unlikely that I would see any further improvement.

I was advised against SCT as the risks outweighed the benefits but they did go ahead and harvest stem cells as a back up. I was in a stable plateau phase for about nine months before my light chain levels began creeping up and at the end of May last year I started CTD therapy. After 6 cycles I was showing very little response so they said 'you'd better have a stem cell transplant'!
That happend in September, they do modify the dose of Melphalan according to your eGFR and all went well and I am now in Complete remission and back at work.

Prior to the SCT my creatinine averaged around 400 but recently it seems to hover around 300. I do see a renal consultant regularly but I do not have to follow a special diet as most of my blood levels are Ok.

I hope this helps
love Alison

[ali49Participant]

Hello Jane,
welcome to the Myeloma club, no one wants to join but its very friendly and supportive. It must seem overwhelming to you and your family, it is hard to take in all the information as you learn about this condition..
I was diagnosed two years ago and have had CTD and recently a stem cell transplant. The hard thing was trying to reassure my family (and myself) that I was not about to die:-S There is so much research being done that I am determined to be positive that this is something we can live with for a long time.
Everyone on here is so encouraging and have so many different experiences to share and encourge you. Take one day at a time especially as the CTD can make you tired and you may get mood swings from the Dex.
love Alison

[ali49Participant]

I've experienced some loss of concentration and a sense of 'vagueness' since my chemo.(Or it could be my age!) I caught the end of a discusion about it on the radio recently which I think was saying that it was a recognised condition but more research needed to be done. The effects wear off eventually but it seems to be variable. I did find this article

http://www.cancerresearchuk.org/cancer-info/news/archive/cancernews/2012-11-27-Small-study-finds-physical-evidence-for-chemo-brain

but it's not helpfull in terms of suggesting a solutuion!
I hope your GP is encouraging and I'm sure it will get better in time. I try to do crosswords etc to sharpen my brain!
Alison

[ali49Participant]

Hi Tom

what a pain that you are back on chemo, it's feels such a slap in the face to be back on treatment and 'reminded' that we have a condition to cope with.
Hope you will soon be feeling your positive self again. I was on PAD last year and apart from the usual dex effects (dex-fx !) I had no problems at all.
Hope it will be the same for you and that you respond quickly,

best wishes
Alison

[ali49Participant]

HI Tina
that's great news about being in remission (not about the itchy rash!)I hope you have many trouble free months ahead.:-D
love Alison

[ali49Participant]

I hated the highs and lows of dex. I was so jittery on the 40mgs they halved the dose. Then when I complained of tremors and the low feelings they also tailed off the last doses over 3 days i.e took 10mg, 6mg, 4mg rather than 20 in one day, it did help!

[ali49Participant]

Hi
I'm sorry that you got such a horrid 50th birthday present! I found this forum so helpful and hope that you will too. As Jean said try to enjoy your birthday and be hopeful for your future because the outlook for people with myeloma is getting better all the time.
Love Alison

[ali49Participant]

Your results sound similar to mine. My last potassium was 4.7 and my eGFR was 14. I don't eat whole bananas but I might put a few slices on cereal. Ditto oranges and tomatoes,(not on cereal!) only one cup of coffee a day if that. I remember when I was on the renal ward and I asked for a cup of coffee there was a shocked hush before I was informed that it was tea or squash!!
Hope your appointment goes well
Alison

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