[finnParticipant]

Hi Andy

That is great news! I have been following your progress and finally things are going so well for you. I have this theory that the more slowly the PPs go down, the longer it takes them to come back after the SCT (mine went down quite slowly and it took a year of chemo to do it, so I needed to make a positive theory about it to keep me optimistic). All the best

 

[finnParticipant]

Hi Val

I had swollen ankles too when on Dex, it causes water retention in the body so everything swells up. I returned to my normal shape when I finished treatment with steroids. Best

[finnParticipant]

Hi Dave

I had those too! I never knew what caused them but maybe it was Revlimid. I always thought they were bed bug bites as they appeared in the night, but I got more of them even when I changed the bedding and pyjamas. I had them once on my legs and once on my face. Eventually they just disappeared. They did not cause me any other problems so I kept on taking Revlimid. Hope yours are gone by now too. Best

 

 

[finnParticipant]

Yep, the sickness lasted for 6 weeks for me, even with 3 different anti-nausea tablets. Quite horrible but eventually it did go away! Hope she feels better soon

[finnParticipant]

Hi Peter

I think Dexamethasone is stronger steroid than Prednisolone so that if you take 1mg of Dex you need to take about six times more (6mg) of Pred to get the same effect. Then again, if Prednisolone has the required effect on your myeloma cells then that should be enough.

[finnParticipant]

That is great news Michelle! May I ask you what were your PP numbers after SCT? Was there a steady decline on the numbers or did they just suddenly drop to zero? Hope you’ll have a very long complete remission!

[finnParticipant]

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 them. Now while I am chemo and dex free I have not taken them for nearly a year. Best

 

[finnParticipant]

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 me to, I was able to work on a phased return three days a week, and the second drug combo Rev and Dex did not make me feel too unwell. 6 months of this and then I had an SCT and so I was off work another 5 months. All this time I was on full pay and I was never asked to do more than I felt capable of doing. My workplace was amazing. It is a big place though so they can afford to be generous. After another phased return I am now back in full time work. Hope you will be able to continue with yours, it does make me at least feel more normal. Good luck

[finnParticipant]

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 does not have a membrane. Clarithromycin will work for this infection but you need a long, at least 10-day, course for it. Of course the cough can be caused by something else too but worth to keep in mind. Hope you will get it sorted soon. Best

 

[finnParticipant]

Hi David H

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

 

[finnParticipant]

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 Lenalidomide? This should be available for everyone. Maybe the consultant thinks that they need to use something that acts very quickly, but surely it would be good to use something that is known to work too. Good luck with the whichever treatment it will be.

[finnParticipant]

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 either. So I have always thought that pain after chemo is a good sign. That does not explain the other symptoms though so I hope the doctors have found out what is causing them. Maybe an allergic reaction to Thalidomide?

[finnParticipant]

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 actually felt hungry. Hope they find out what’s wrong soon.

[finnParticipant]

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

 

[finnParticipant]

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

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