I did not have headache when on Carfilzomib but it is a possible side effect of any drug. How bad is it? If it is very painful, I would contact the doctor right away. Do you have any other new side effects such as swelling in the face, chest tightness? If it is mild and only comes irregularly, I am sure it is nothing to worry about but please…[Read more]

First of all, sounds like you did not have high levels of myeloma cells in your bone marrow in the beginning (15% is not much, I had 65% and I have heard of cases with 90% infitration). Also, your paraprotein levels were quite low, and they have gone down with chemo although slowly. It would be good to talk to your consultant about either…[Read more]

Sounds like your mum’s chemo CTD was causing too many side effects for her to consider taking any more drugs. However, there are many other treatments with less side effects. I hated the C part (cyclophosphamide) of CTD, it was awful. Then I was on lenalidomide and steroids and now on lenalidomide only, and it was so much easier with…[Read more]

Where exactly is the pain? If it is on the right side of the body it could be something unrelated to myeloma such as appendicitis and you need to get him to the hospital. That would explain the fever too. But hopefully it is not anything too serious and will go away on its own soon. All the best

Sorry to hear about your troubles. PP level 6 is quite low and it could be just MGUS, a precursor of myeloma which does not require treatment and may not even lead to a full blown disease. However, anemia is a common problem in myeloma. Do you know your hemoglobin level? Anemia could explain lots of your symptoms, such as getting tired when…[Read more]

I am on Carfilzomib too. I had it twice a week for the first cycle but this was so toxic that it caused liver damage and we had to reduce the dosing to once a week only. This has been as effective as having it twice a week, and I do not have problems with liver enzymes anymore. I don’t get nausea from it or steroids but I do get lots of…[Read more]

Which drugs does he take for nausea and stomach issues? I tried quite a few different drugs for nausea and (finally) I was given Ondansetron, which worked really well. For stomach issues I have always been prescribed Omeprazole, which works most of the time but not always. Susie’s advice about taking steroids with food and drinking…[Read more]

105 mg of prednisolone is equivalent to 17 mg of dexamethasone, so hopefully you will not get more side effects from it. Melphalan on the other hand is a classic chemotherapy drug and I would be surprised if you do not get some side effects from it, even if having only a low dose. Hoping it gets easier for you and best of luck with the treatment

My PPs were slowly climbing up and I got to 18 before the treatment was restarted. At that stage I had no symptoms at all.

Your sickness sounds awful. I had similar symptoms after SCT. Maybe cyclophosphamide caused damage to your guts like mephalan did to my stomach? I felt sick all the time, day and night, and no anti-nausea pill helped (although domperidone might have helped a bit, you could also try dexamethasone). To be able to sleep I had a sleeping…[Read more]

Good to hear that you are doing well. Just out of curiosity, are they offering you a possibility to go on daratumumab? I would like to try that drug next but I don’t know if it is available for us here in UK yet. Are they offering you MUK8 trial because you previously responded well to proteosome inhibitors such as bortezomib?

My consultant thinks we should try to get the light chains as low as possible, however long it takes. It is difficult to understand why yours thinks that a bed in a hospital is good enough reason to do SCT even if your light chains are still dropping. I was on Lenalidomide and Dex for 8 cycles, and looking back could have been even longer…[Read more]

In most cases it is very easy to diagnose myeloma by a simple blood test that measures paraproteins. To do that, you have to ask your GP for this test though, as it is not routinely determined from other blood tests. And yes, I would want to check it to find out if you have myeloma. I had the same symptoms as you. It would be good to do…[Read more]

Interesting article about gene therapy in multiple myeloma. It looks like it has not been very effective treating myeloma so far, as in the American study published in Nature Medicine the progression free survival, PFS, was only 19 months, and it was estimated that all patients in the study would relapse in about 30 months (graph shown in…[Read more]

Your myeloma journey sounds very encouraging, only second course of chemo in 9 years, well done. About the novel genetically engineered immune cell treatment, it is not available for general public yet. It has been used in few cases whrere there are no alternative treatments available. However, this novel thereapy, which sounds perfect, is…[Read more]

Great to hear that your SCT was so successful. I had mine two years ago and I can remember how I also realised some months after it how poorly I must have been as I suddenly felt so much better. It keeps getting better and better and about a year after SCT I felt completely normal, if possible even better than I had felt for a number of…[Read more]

Great to hear that you are on the mend. We were very worried, and I kept on checking this discussion forum several times a day to see if you had written anything! If you still feel weak and the drugs are too much, please ask them to give you a break from any treatment. You can always go back on Pomalidomide and Dex when/if you paraprotein…[Read more]

Sorry you have had so many problems with the diagnosis. Sometimes myeloma is so different from others and shows no other symptoms than bone lesions.  I have read about cases like your husband’s: non-secretary (no M-spike) and clear bone marrow biopsy, and the progression of the disease has to be followed by imaging only. Hope your consultant…[Read more]

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

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,…[Read more]

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…[Read more]

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

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…[Read more]

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…[Read more]

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!

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

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.…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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

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…[Read more]

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.

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]

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]

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]

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

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]

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]

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]

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

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