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Hi Rosie
I was on a drug treatment a few years ago that caused me dizziness, sickness, and diarrhoea. When the drug dose was halved, it still worked fine and caused me much less side effects. We all have different metabolism and can respond to drugs differently, so it is still possible that a lower dose will have the desired effect on myeloma cells. Could you suggest this for your mother in laws treatment? I so hope she is feeling better soon.

[finnParticipant]

Hi there
I was first prescribed 25 mg lenalidomide maintenance but that caused too many side effects and it was finally lowered to 10 mg, 21 days on, 7 days off. I also take low dose of aspirin, and I take these medication in the evening before bed. They sometimes disrupt my sleep which is annoying but not a real problem, whereas stomach problems have been a horrible side effect. Lately I have taken colestyramine for that and it has basically solved the problem. Now nearly 3 years on this treatment and living life to the full.

[finnParticipant]

Hi Chris,
Multiple myeloma can inhibit production of red blood cells which you can see as anemia, as these cells bind iron. You cannot correct myeloma anemia with eating iron tablets though, as the cause for this anemia is not lower iron levels but cell levels. If you can correct anemia with iron tablets (iron defiency anemia), the cause is most likely either not absorbing enough iron (coeliac disease caused by gluten allergy for example) or stomach or gut problems (such as ulcer, bowel disease). Of course there are other possible causes (kidney disease, bleeding disorders, hemolytic anemia caused by fragile blood cells, parasite infection) and it is a good idea to go through some tests to work out the reason for your anemia, especially as you have an increased IgM level. All the best

[finnParticipant]

Hi Sylvia
Your increased pelvis/hip pain is worrying and unintentional weight loss is never good so it is possible that your MGUS has progressed to myeloma. The tests you need, at least for now, are blood paraprotein level test and serum free light chain test. If these are normal, ask your GP to refer you to a specialist. They can arrange other tests such as CT and MRI to check if there is anything going on. Even if everything is normal, it would be great to know that the pain is not due to myeloma, don’t you think?

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Hi Sharon
Sorry to hear about your brother. His lab results don’t quite fit with myeloma diagnosis as he has elevated plateles and white cells, although he has anemia, which is very common in myeloma. It could be something else (and less sinister such as increased production of platelets that then causes the other symptoms), but of course it will be soon found out with all those lab tests. All the best

[finnParticipant]

Hi Phil
I am having dexa, omeprazole and aciclovir too, and I take them in the morning as you do (plus evening for aciclovir). I am not on antibiotics (co-trimoxazole) and I do not know if that can cause any inter-reactions with the other meds, most likely not. I am a little surprised with the other two medications you are having though. Do you have problems in absorbing iron? Ferrous fumarate is iron supplement but in most cases myeloma patients have anemia because they are not producing enough red blood cells and not because of iron deficiency. Iron supplements do not help when you have reduced number of red blood cells. In fact your iron levels can get too high and cause you stomach pain. However, if you do have problems in iron absorption then of course this iron supplement is good. The other drug you are having, allopurinol, is for increased uric acid level and gout. If chemotherapy causes you that then it is good to take it but this drug has lots of interactions with other medicines and it can also reduce the number of blood cells. So maybe good to have a chat with your medical team about when to take it. All the best

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Hi Paul
I was diagnosed in my early 40s about 6 years ago. I had had intermittent back and hip pain for a long time, I would say the first symptoms appeared 7 years before and the continuous pain about a year before diagnosis. I have had two lines of treatment, one SCT, and I feel great most of the time. Even though I have bone lesions all over my body, I have been mostly pain free since the first line of treatment. I think this is because I do lots of exercise such as yoga and pilates. Other sports that have high impact on bones such as running and golf hurt too much though. I do hope you’ll find out soon what is causing all that pain as not knowing is the worst part of the journey.

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I am so sorry to hear that Stu. Is there really no other treatment they could try (Daratumumab, Pomalidomide, Carfilzomib)? I guess it is inevitable at some point to all of us. My thoughts are with you

[finnParticipant]

I hope she is feeling better after the hospital visits. I wondered if she was on Carfilzomib as this drug could cause kidney problems. But if the drugs are not the cause, it can be that proteins produced by the myeloma cells are accumulating in the kidney. This should improve when the treatment reduces myeloma cells. By the way, are Thalidomide and Dexamethasone really the only chemo she is having? No Velcade (bortezomib) infusions? These three are usually given together as the first line treatment.

[finnParticipant]

Hi Stu
That sounds like kidney problems. What chemo is she having? Do you know if she has light chain myeloma?

[finnParticipant]

Hi

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 let your doctor know at some point. All the best

 

 

[finnParticipant]

Hi Alex

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 changing to a different chemo to get paraprotein levels to zero, or doing SCT, unless you prefer something else of course. Best of luck

[finnParticipant]

Hi Sue

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 minimal side effects! Maybe the consultant, nurses, and other patients, could convince your mum that there are more suitable chemo treatments for your mum to try? Best

[finnParticipant]

I was on Carfilzomib, Revlimid and Dex combo and it worked really well. The triple drug combination was much better than any double drug treatment I’ve had so far. So if your husband has any energy left why not give it a go? If it does not work, or if he feels too bad, the treatment can always be stopped at any point.

[finnParticipant]

Hi Julie

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

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