Hi Sharron

There was no chance of me sleeping while on Dex so I just took sleeping pills on Dex nights. They made such a difference to my sleep and therefore to my attitude towards everyday life/drugs/illness that I would strongly recommend them to anyone. As I took them only a few of nights per month, there was no problem of getting addicted to…[Read more]

Hi Emma

I was in my early forties and in full time employment when I was diagnosed with myeloma. During the first induction therapy I took 6 months off work as the chemo made me feel so bad. After that I needed a different drug to continue with the therapy and during that time I went back to work. That was mainly because my boss repeatedly asked…[Read more]

Hi Carol

Sorry to hear about your persistent cough. It reminds me of my mycoplasma infection I had during the years before I was diagnosed with myeloma (I had lots of atypical infections). No fever but felt poorly and the constant coughing lasted forever. This bacteria is usually caught late summer/early autumn. Difficult to detect by labs as it…[Read more]

Hi David H

I found that beer and liquorice help relieve constipation. Anyone found other natural/food things to try?

Hi

I agree with you, there is no logical explanation why drugs are not used again if they worked the first time. As your myeloma has not become refractory to the drug yet (I assume the PP numbers did not start to rise while on CTD), why not use the same drug again? Alternatively, as Thalidomide worked so well for you, why not use the related drug…[Read more]

Hi Helen

Sorry to hear about your uncle’s problems. All I can add to the previous messages is that I got the worst back pain imaginable after the first rounds of chemo. Those rounds reduced the paraproteins (and therefore the myeloma cells) a lot, and during the next chemo rounds I did not get a bad back pain and the PP numbers did not go down…[Read more]

Hi Clover

Could it be just sickness? I felt so sick after sct that I could not eat properly for a very long time. In fact I felt so bad that my every single thought was “I feel sick”. And I was on three different anti-sickness pills all that time! Finally, after six weeks I started to feel better and it was great when after couple of months I…[Read more]

Hi Carol

I am the opposite, I used to get hay fever in spring/summer but after SCT earlier this year I have not had any symptoms! Every cloud…

Hope yours is just a blip. All the best

Hi Susie

I experience pain when I put weight on the bones which is while walking (hip and upper leg) and bending down (rib and lower back). It is sort of dull aching pain, at least in my case. The pain has not gone away even when the myeloma cells are gone which I assume is because of unrepairable bone damage. All the best

Great post Mike, very funny. Thanks for sharing your journey. Hope you stay in remission for another 7 years at least.

Hi Ian

I used to get cramps in my fingers and legs when on dex! I thought it was water retention caused by steroids. Anyway the cramps disappeared when I stopped taking dex. Best

Hi Frances

Sorry your mum is feeling poorly. Does she feel dizzy when getting up from bed? Just wondering if the blood pressure medicines are lowering her blood pressure too much. Hope she finds out soon what is causing the problems.

Hi Sue

When I was on Rev the doctors warned about two things: allergic reactions and blood clots. Have they ruled out these in your husband’s case? Hope it all gets sorted out soon.

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.

Hi Mandy

I am so sorry to hear your news. I am also very surprised your consultant has put a time frame on your disease progression, especially as new drugs are developed all the time. Anyway, have you thought about going on maintenance first, give the drugs a chance to keep the myeloma away. This may take a long time as there are lots of drugs…[Read more]

Hi Jane

Are you going to have another SCT? If so, and if Velcade is not lowering the PPs anymore, why are they continuing with it? Maybe your doctor has a good reason to keep you on Velcade, can you ask him? My doctor told me that they will stop using it as soon as PN becomes too painful.

Hiya

I was told by a number of people that Velcade is a wonder drug, and I was very disappointed when it did not work that well for me! After 5 cycles my doctor changed it to lenalidomide, which reduced the PPs very nicely. Luckily there are many drugs to try even if one doesn’t work!

Hi Scott

Your shoulder pain sounds very familiar; I have had similar pains in my shoulders since SCT last December. I have also had pains in my arms, legs, hip, you name it. I have not had Zometa since SCT so maybe the pains are just the bones and joints recovering from the damage caused by mephalan?

Hi Myelomaminx

Sorry to hear that you were unlucky with stem cell harvest. Just to clarify that Plerixafor is used to help move stem cells from the bone, where they are produced, to the bloodstream, so that they can be collected. You may have produced some stem cells after growth factor injections but none were released to blood (and therefore…[Read more]