That’s all good to hear Jo. As you say long may the good times continue!
I had a phone call from my GP yesterday morning. She said she just wanted to catch up with me after 6 months of treatment. She said that the hospital doctors tend to concentrate on the physical side of things, scans blood test results treatment etc but she said she wanted to know how I was felling in myself, how the myeloma was affecting me day to day, how I was coping with the treatment and side effects etc etc. it was a lovely phone call and we chatted for almost 30 minutes. I really appreciated her phone call and I told her that too.
We don’t expect these things to happen to us but you are right Jo, there is light at the end of the tunnel and we are getting through that tunnel nicely.
Najmah
Thank you for asking Jo.Yes it’s 6 months since I was diagnosed, where has that time gone?! I’m doing really well. I saw my consultant on Tuesday, he said my Paraproteins are at just 1%. He said I’ve had an excellent response to the treatment and all my other test results were encouraging and showed no major concerns. In myself I’ve been mostly ok, still the odd day when I don’t feel so good but mostly I feel my normal self. One thing I’ve had over the past few weeks is an increase in hip and left femur pain. They are the areas where the lytic lesions were picked up. Through the day I can cope, it’s just kind of there in the background but at night the pain can be quite bad. The consultant said that he thinks it’s probably part of the process. He explained it as the treatment is destroying the Paraproteins and leaving little holes in the bones and over the course of time the treatment will then work to kind of ‘fill up’ the holes. To be on the safe side he’s organised a full body MRI scan which I’m having on 16th October. I’m still on all of the treatment although the steroids have been reduced from 20mg on both Tuesdays and Wednesday to just 4mg on those days and I’m thankful for that as the side effects were awful. Having the Isatuximab via an injection is good too, saves a lot of time!
How are you Jo? I know you are a few months more down the line than me so I hope you are having a good response too and are feeling well in yourself.
Najmah.
Have you tried Lansoprazole? It’s a tablet that treats heartburn, acid reflux and indigestion. I was presciped it to ward off any indigestion and heartburn. I have to take it on the days I take Dexamethasone and I take it half an hour before eating.
Thanks, yes I’m booked in for my flu jab and Covid booster. I’ll take advantage of anything on offer to help me get fit!
Hi Jo,
When I saw the consultant a couple of weeks ago ago she said the injection had just been approved at the end of June so the Freeman have obtained it quickly.
Good that you can have relaxing reflexology while you are having your infusions, that sounds lovely. I think that kind of thing is available at the Freeman but not on the ward, perhaps it’s at the Maggie Centre in the hospital. I quite often fall asleep as soon as I’ve had the antihistamine which they always give me first!
I hope you can move to monthly treatments soon, that will be so much better.
Hi everyone,
Just wanted to tell you that at my treatment today I was given Isatuximab via an injection in my stomach. Great news that it is now available to be given this way. It took ten minutes for the injection compared to 1hr 15mins via infusion. I did have three injections in my stomach today! The Isatuximab, Bortezomib and Filgrastin.
Jo, I know you are on ISA-VRD the same as me and just wondered if you were having Isatuximab via an injection now too?
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
