Hi jpk,
Sorry to hear your wife is still in pain and that it is spreading across her chest. Have you heard yet from your named nurse? Hopefully as her treatment goes on her pain will lessen. Do you know what her treatment is called? I’m on ISA-Rvd and I suffered terrible constipation when I started my treatment, It’s something that I’ve never been bothered with before and as your wife knows it’s so uncomfortable. I was told that the main culprit causing the constipation was the Bortezomib (Velcade) injection I have every week. My consultant prescribed a powder you mix with water, it’s called Laxido, she also prescribed a tablet called Sennosides and I was told initially to take a combination of both. I was reluctant to take laxatives as under normal circumstances I wouldn’t take them but as my consultant said ‘these are not normal circumstances for you’. I found, through trial and error what combination worked best for me. So maybe your wife could ask her consultant about a suitable laxative. Also drink plenty of water, try prunes and prune juice and eat plenty of green veg.
I’m now 17 weeks into my treatment and find I only have to take Laxido now and again. So I’m not all that far into my Myeloma journey (my plan has my final treatment as August 2028!) I have the odd day when I feel fatigued but on the whole I’m carrying on with life as normal as I possible can.
I hope your wife will soon start to feel the benefits from her treatment.
Hi,
I’ve just read your post and was sorry to hear of your wife’s diagnosis. She’s been very fortunate to be able to start her treatment so quickly. I’m in Newcastle and also had a short time span between my investigations and treatment beginning.
I hope by now her pain is easing, did she manage to speak to her specialist nurse or maybe the consultant to sort out her pain control? I would say it’s always worth giving your named nurse a ring as they are very good at either sorting you out or redirecting you to the right person.
For myself my pain was mainly in the hip and lower back area. My MRI showed lesions in my lower pelvis and two fractures in my lower spine but my pain wasn’t severe so was easily controlled by paracetamol and codeine at first then just paracetamol as the codeine does cause constipation.
I was just wondering if her MRI showed any reasons why her pain would be under her arm.
Hoping that she has her pain under control now and wishing her well during treatment.
Thanks Rabbit,
I got a bit mixed up in my post there, it’s the Isatuximab that’s going to be available as an injection instead of an infusion. We all know that Velcade is an injection!
Hi Jo, Rabbit and everyone. I had my appointment with my consultant this morning and I just wanted to share the good things she told me. She said I’d responded remarkably well to treatment and already my Paraproteins were almost undetectable. All my other markers are good too. I am also more than happy that she has reduced my Dexamethasone from 20mg twice a week to 4mg twice a week with a view to stopping it completely by Christmas. We also talked about remission, she said she expected my remission to be 6-8 years and that when the time came there would be second line treatments available to me. So at 73 I was happy with that (maybe not so if you were 40 or 50!). She also said that Bortezomib (Velcade) has just become available as a sub cut injection. She expects it to be available at the Freeman within a few months and she would put me on that straight away. Which would mean a 5 minute injection instead of an hour and a quarter on a drip. So I came out of that consultation very happy!
Hi Rabbit,
I’m not sure but I think you are right. I seem to remember my consultant telling me initially that on remission I would be given Lenalidomide if I was a standard risk patient but possibly be given Isatuximab too. As I say that was said at my initial consultation and I didn’t take all of that in as I was more concerned at the time on what my actual treatment would be and how soon it could begin!
Nice to read your post Swertres. I’m really glad I found this discussion board, it’s so good to ‘speak’ to people in the same boat and to hear of their experiences and also have their advice.
Regards,
Najmah
Thanks Rabbit, you must have been so pleased after six months to be told you were in effective remission. I’ve been told that so far I’m responding really well to my treatment so I’m keeping everything crossed that the end date of treatment on my schedule (August 2028, so far away!) can be shortened.
Sorry to hear you’ve been through a bad patch Jo, I suspected maybe that was the case when you didn’t post for a while. However glad to hear that you are now in a better place and you are on maintenance only and will hopefully be moving to monthly by the end of the year. So the maintenance only has come around fairly quickly for you, I hope I’m the same. I know we’ve discussed in previous messages how horrified we were when we got the initial programme of treatment and it was for about two years! So has yours been revised now?
I am doing ok, experiencing a few more side effects now I’ve had 15 weeks of treatment. Luckily I’ve coped well on the whole. I’ve had some fatigue but my main side effects have come from the Dexamethasone. I take 20mg on Tuesdays and again on Wednesdays. They keep me awake a lot during the night then I’m usually awake for the day by 4.30am then I’m racing around like a mad woman all day😂 Also I’ve noticed on those two Dexamethasone days my face is very flushed and hot. Thursday and Friday seem to be the days I’m experiencing fatigue, some weeks not as bad as others.
Warm regards,
Najmah
Hi Jo, haven’t heard from you in a while. I hope you are ok and your treatment is continuing to go well.
Regards,
Najmah
Hi Rach,
My treatment is ISA-VRd which is Isatuximab, Velcade(Bortezomib) Revlimid (Lenalidomide) and Dexamethasone. I know there’s another lady on this site who is having the same treatment as me.
I think the only way to determine whether the Zometa is working is by having a bone density scan or maybe an MRI scan. Although the consultant did tell me that it starts to take effect after about three treatments and any back pain should improve. I would say that my back and hip pain has reduced, it’s still there but it’s not as bad as it was and I can control it with paracetamol I don’t need anything stronger.
Regards,
Najmah
Hi Rabbit (I’ll ignore fmi2317, why do these strange posts appear?).
Thanks for all of that helpful info. I’ve done resistance training and weights for a long time, mainly in the form of a Body Pump class two or three times a week and also Body Combat 3 times a week. All of that has stopped for now. I’m looking forward to going into remission so I can perhaps start again. As you say I will get the approval of my consultant or physio before I embark on any form of exercise other than walking.
As a matter of interest how long into your treatment were you told you were in remission?
I’ve had my treatment today (my 15th week) alongside the monthly Zometa. I didn’t have the Zometa during my first treatment as I had to wait until I’d had a dental check and then sign a consent form, so maybe it will be the same format where you are being treated.
Good that you have a stem cell transplant lined up. My age was against me for that but my treatment is fairly new, it just passed clinical trials last October. So I’m very hopeful that it’s a good option.
I can totally understand how hard it would have been for you to tell your family, it’s not an easy thing to do and it’s certainly not easy for the family to get a grip of. I’m sure it went ok for you and hope that your family were not too upset, it’s the initial steps in everything that’s the hardest. I have two daughters is their 40’s, I’m very close to them and they were obviously shocked and upset but they were very positive and supportive. As was my husband (who has non Hodgkins Lymphoma, but that’s another story for another board!). I told my sister too. The little niggle for my daughters and my sister is that my mum had MM 25 years ago and although I’ve been told it’s not hereditary there is an increased chance (I think about a 4% increase) of a direct relative or sibling getting it.
Good luck for your first treatment on the 20th, do you know what you will be getting? I found my first treatment took longer as they did the infusions much slower in case I had any reactions. I didn’t, which meant subsequent infusions could be given much quicker. So maybe plan for a longish first session.
I was a runner until my diagnosis in May. When I say a runner, more of a jogger really in the last few years but I liked getting out in the fresh air and letting my mind wander while I ran along the footpaths or along the nearby sea front. It was really through running (and going to the gym) that prompted me to make my initial appointment at the doctors. I started to feel pain in my hip and lower back while running which made it increasingly difficult to run. I was quickly diagnosed with Multiple Myeloma. So really I suppose I could say I had a quick diagnosis because I was fit! Because I have two disc end plate fractures I can’t run right now and I really miss it, I do go out every day and walk one of my running routes, I enjoy it but it’s not the same!
I hope you get back into your running Rabbit. I never liked the spin classes at the gym but maybe I should try them again when I’m a bit further into my treatment. Do you find your back is OK on the bike? I suppose the big plus of cycling is that you are not pounding on your feet and putting impact on your legs and back.
Hi Rach, I hope you are getting on ok since your diagnosis. I was diagnosed in April but at 73 Im much older than you. I have two end plate fractures at L3 but was told that the treatment would help heal them, I didn’t need a brace or any kind of support. Initially I also had 4 days of Dexamethasone before starting chemo the following week. I dread the two days I take Dex (10 x 2 mg on Tuesdays and Wednesdays). I take them first thing in the morning and feel like I can’t stop all day then I can’t sleep at night! I’m on Isa-VRD. I’ve had two infusions of Zometa so far, a month between each infusion. I was told to have a dental check up and any treatment that my dentist thought was necessary before starting Zometa as it can (rarely) affect the jaw and teeth. I take Adcal too.
Shaun it’s very encouraging for us all fairly recently diagnosed to hear that you are now 8 years post diagnosis and doing well.
I’m so pleased for you Malcolm, that’s great news.
Hi Leelynn and welcome. Since joining I’ve found this forum to be a wealth of information and support, I’m sure you and your partner will too. Have to give a special mention to Rabbit, he’s a wealth of such sensible information and advice. I can only share my experiences.
I was diagnosed with IgA myeloma too in April this year. I’m not high risk though as my plasma levels were 40% after my bone marrow test. So today I’ve just had week 10 of my treatment, I’m on Isa-VRD and it’s working well for me. Paraproteins play a big part too, at the end of week 6 (the end of my first cycle) my Paraprotein levels have dropped significantly. So there can be good news and a lot of hope. The final part of my bone marrow biopsy has only just come through and that’s the Cytogenetic testing. I’ve got Hyperdiploidy which I’ve never heard of before but my consultant told me it affects 50% of myeloma patients and is characterised by extra odd number chromosomes in the plasma. But it’s not always a bad thing as sometimes it can increase the remission time. So I’ll take that!
So I’m wishing your partner and you well in your journey and in his treatment.
