[finnParticipant]

These drugs, and Revlimid especially, are routinely used for myeloma patients and therefore I think that the approach by Myeloma UK to get these drugs funded from the NHS normal drug funds instead of the special CDF fund is a correct one. I hope they will get this approved in the next two months!

[finnParticipant]

Hi Susie

I did not have constant pain but what I would call an annoying and painful ache while walking, bending etc. Sometimes my femur and hip were aching during night when sleeping on one side for too long. I would not worry about it (easier said than done), and maybe you can take some painkillers for it? Best

[finnParticipant]

Hi

Unless you do not mind taking drugs continuously (maintainance), it is recommended to have SCT as it deepens your response to the induction therapy and should delay relapse. Like you, I had VCD treatment first which dropped my PP values from 60 to 30. After that, I had quite a few cycles of Lenalidomide and Dex that lowered my PPs to under 10, and SCT did not change this value practically at all. However, I could be drug free after SCT and I have had the same PP value for about two years now. Of course, this can change anytime, but so far I have really enjoyed being drug free. Best of luck with it all

[finnParticipant]

Hi Susie

Yes, I had similar pains after Zometa infusions! Mine started maybe a week after the infusion and got worse for two weeks before getting better just before it was time for a new infusion. My lower back, left hip and femur were really achy. I always assumed it was caused by Zometa going into bones and taking minerals such as calsium with it, but it could have been something else too, such as bone marrow making new cells/components for the bone. Anyway, after two years I have now stoped Zometa infusions and although I have occasional bone pain, it does not have a pattern and I can cope with it without pain killers. Best wishes

 

[finnParticipant]

Hi Pisces

Sorry to hear about your husband’s troubles. I was wondering, have they scanned his stomach area to rule out plasmacytoma in the guts? If I remember correctly, they are commonly found there too. Best of luck with the treatments

[finnParticipant]

Hi Simon

I remember having similar pessimistic thoughts after my SCT. It must be something to do with your body recovering from all the drugs and treatments and not knowing what to do. Also, you have been concentrating on getting through it all and now after the SCT you have nothing to focus on. However, in my case this passed after about a year and I started to feel very good both emotionally and fysically. Give your body and mind some time to recover, I am sure you will feel better soon. Take care

[finnParticipant]

Hi Vicky

So sorry to hear that bendamustine did not work for your husband. I am a bit puzzled why his doctors are thinking of using Mephalan, as it works the same way as bendamustine (see “Bendamustine and Mephalan kill myeloma cells similarly through reactive oxygen species production and activation of the p53 pathway and do not overcome resistance to each other”, Leukemia and Lymphoma 2014.). Revlimid and Dex sounds a much better option as it works differently. All the best

[finnParticipant]

Hi

Don’t despair yet. Things look bad now but it does not necessarily mean that the disease is overly aggressive and untreatable. In fact, if your sister in law has had only Velcade treatment, it is very possible that some of the other drugs work better in her myeloma and that she will get longer remission. There are plenty of drugs to try!

[finnParticipant]

Hi Peter

Nearly missed your post as it is hidden among the others. I am so sorry to hear that your myeloma cells have changed and seem more unpredictable. Really hoping that the treatment works well for you. Have you tried all the other available drugs? All the best

[finnParticipant]

Hi

Do you mean that your husband’s paraproteins are not coming down as quickly as expected? That is quite common. I had 6 cycles of Velcade, Dex, and Cyclo that only halved the level of my PPs, after which I had 6 cycles Revlimid and Dex. Finally the PP levels were low enough  (PP 5) and I was ready for SCT after a year of continuous therapy. Hope it all works out for your husband.

[finnParticipant]

I am so sorry to hear of Scott’s passing. He wrote several posts here that were always very optimistic and he was so upbeat about life in general. He seemed to live his life to its fullest. I am shocked he is gone. My heart goes out to you and your family in this difficult time.

[finnParticipant]

I am so sorry to hear your news of Scott’s passing. He wrote several posts here that were always very positive and he seemed very upbeat about life in general. It sounded like he was living his life to its fullest. I am shocked he is gone. My heart goes out to you and your family during this difficult time.
<div id=”stcpDiv” style=”position: absolute; top: -1999px; left: -1988px;”>My heart goes out to you and your family during this difficult loss. – See more at: http://obituarieshelp.org/condolence_phrases_prose_sentences.html#sthash.vajii871.dpuf</div&gt;
<div id=”stcpDiv” style=”position: absolute; top: -1999px; left: -1988px;”>My heart goes out to you and your family during this difficult loss. – See more at: http://obituarieshelp.org/condolence_phrases_prose_sentences.html#sthash.vajii871.dpuf</div&gt;
 

[finnParticipant]

Hi Vicki

Please ask for another consultant, yours does not seem to know much about current treatments! There is no way that after trying just Velcade and Bendamustine you have run out of options. Maybe the way these drugs work is not right in Colin’s case, so maybe better avoid proteosome inhibitors (Velcade, Kyprolis) and alkylating agents (Bendamustine, Mephalan). First at all, if Revlimid worked previously, it can work again and can then be used as maintainance too if you are worried about relapse. Also, if Revlimid worked, other immunomodulatory drugs most probably work too. These are Thalidomide and Pomalidomide (Andy knows all about these). If there are problems about using these drugs because of side effects, the drug dose can always be reduced to suit the patient. And how about the good old chemotherapy drug cyclophophamide? Hope you will find another consultant who is a bit more positive about Colin’s disease and treatment options.

[finnParticipant]

Hi Tom

The first two cycles of Rev and Dex were the most difficult to me, then it got easier. Although I did not get nausea as a side effect, I did get back pain and headaches like you. Nausea I have had if the blood calsium levels have dropped too much because of Zometa. Maybe you have felt worse because of the infection you have? I am not in treatment right now but when I caught a flu/severe cold a few weeks ago I felt rubbish for a week (nausea, fever, headache…). Hope you will feel better soon.

[finnParticipant]

Hi Vicky

I am so sorry to hear that Velcade did not work for your husband. I have similar thoughts as Ali here; how about suggesting the consultant to add cyclo to the Velcade and Dex treatment? Has he been on Revlimid yet, and if it worked, how about using it again? Or trying to get Pomalidomide like Andy? I thought Bendamustine is not used anymore when we have these much newer drugs available. Best of luck

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