najmahHi Bella, whereabouts in the North East are you? I’m being treated at the Bobby Robson unit at the Freeman hospital in Newcastle and the consultants are excellent.
najmahHi GC, I’ve heard of MDS as my friend’s husband is living with it although he has never had Multiple Myeloma and he has never had chemo. I was unaware that MDS could develop alongside Myeloma or could be caused by prolonged chemotherapy. So I’m very sorry to hear that this has happened to you and can understand what a shock it must have been. I hope that your final biopsy test results are encouraging and I wish you well.
najmahHi Graham, I was diagnosed in April of this year and I’m on the same treatment as you, ISA-VRD. I’ve have had minimal side effects from the regime. A little bit of fatigue and ongoing constipation but nothing major. I’m having Zolendronic Acid infusions every month and I believe that early next year these infusions will drop down to three monthly. It’s just about the only drug that’s given me side effects. My treatment day is Tuesday and I’m generally fine on the Wednesday but by Thursday I’m feeling pretty rough. Like you I feel a bit flu-ey and generally unwell with some nausea and lack of appetite too. It lasts a good few days and then I seem to turn a corner. So I’m glad it’s only once a months so I’m looking forward to it reducing to every three months.
najmahSorry Jo I’ve only just seen your message from the 14th. I’m still taking Riveroxiban because I’m still taking Lenalidomide. I wasn’t offered Famotidine only Omeprazole and I find that works well for me. I only take it in my steroid days which are Tuesdays and wednesdays. I see the consultant on 10th November and he said he might take me off the steroids completely at the end of this cycle.
It’s good that you are now on fortnightly sessions, looking at my schedule I start fortnightly too mid December, I won’t know what to do with my spare Tuesday every other week 😂. Do you know when you will go onto monthly treatments?
Hello too Newscan, you are certainly not alone. It’s very reassuring to read of everyone’s experiences on these boards and also gain valuable advice. Sorry to hear that you have other health problems that are getting in the way of your treatment. We drive to the hospital too and all cancer patients get a free pass for the car parks. Those unable to drive can get free transport from a charity run taxi/mini bus service here called Daft as a Brush, maybe you have something similar available at your hospital?
najmahGlad you enjoyed them Jo. I find those two doctors really easy to listen to and they explain the topic so well.
Been for my treatment today, the start of cycle 5. My cycles are 6 weeks long, are yours too Jo? I’m finding things much much quicker now I’m having the Isatuximab via injection, I was in and out in just over an hour today (and came away with the usual carrier bagful of drugs as you do at the beginning of each cycle😂).
Najmah
najmahEvening all,
That’s good then Rabbit, how often do you have your treatment now?
I’m still weekly although the Isatuximab (now via an injection so takes ten minutes) is every two weeks. I’m starting a new cycle tomorrow so will come home with the customary carrier bag full of drugs😂. Friday I have an MRI scan then see the consultant on 10th November so I plan to ask him questions about remission! Last time I saw him he said the Paraproteins were so low they were virtually immeasurable so I’m hoping they stay that way.
Hope you are doing well too Paulomarin.
Do any of you listen to The Myeloma Minutes podcasts? I quite often do when I’m out walking and it’s very good. Different aspects of Myeloma are covered by two doctors,
Dr Jam Kothari and Dr Sally Moore. They explain whatever topic they are covering extremely well.
najmahHi Jo,
Good to hear that you are feeling really well at the moment. I am too but I know we all have our off days but hopefully the good days outnumber those.
I think your last sentence ‘Life is good, albeit different from before and that is what I plan to hold onto’ is spot on, just very apt for a lot of us on this forum. It’s exactly how I feel right now.
Najmah
najmahHi Paul, I read your message with interest as I’m the same age as you and I’m also on ISA-RVD. I’ve been on it for six months after being diagnosed in April of this year. I don’t have any words of wisdom for you as I haven’t had any really bad side effects so far, just the odd day of feeling fatigued and the occasional nauseous feeling. Oh and bad constipation! I also take Aciclovar and Co-Trixamol alongside Riveroxiban and for two days a week I still take Dex, although at a much reduced dose than I was on originally.
I know the Lenalidomide can cause problems for lots of people so hopefully when you talk to your consultant on Wednesday you can come to the right decision on what will be the most beneficial course for you to take.
najmahHi Jo, I didn’t know either that remission from Myeloma would only ever be classed as partial, although like you I know it is a relapsing/remitting disease. Maybe it was the way the consultant told you and used the word ‘partial’ that came as a shock.
I know when I saw my consultant the time before last and I mentioned that my programme of treatment was listed until August 2028 she said ‘unfortunately that’s not the end of your treatment, it will continue in some form for the foreseeable future’.
I hope you can put the phrasing behind you and that you continue to feel well.
Najmah x
najmahThat’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
najmahThank 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.
najmahHave 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.
najmahThanks, 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!
najmahHi 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.
najmahHi 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?
