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.
Thanks Jo, how are you doing?
Hi Malc and welcome to the forum.
Did you have your CT scan on your skull because Myeloma was suspected?
It’s reassuring that the full body CT scan didn’t show any other concerns and your blood tests were normal.
Good luck with the bone marrow biopsy, I suppose that will be a strong indicator as it will measure any abnormal plasma cells so hopefully your bone marrow test will come back normal too.
Hi all, I’ve been for my treatment today (thankfully the ward has super efficient a/c and it was lovely and cool, I even had to put my cardigan on😂). There was also a letter on my NHS App from the consultant who reported that my Paraprotein levels have dropped right down, from 32.1 to 6.29g/L so I thought I’d share that good news with you all!
I’m seeing the consultant next Tuesday morning before my treatment so she will discuss the blood test results in more detail.
Hope everyone is doing well and coping with this heat.
Thank you all so much for your helpful replies.
Prior to my diagnosis in April I went to the gym just about daily, I did classes, namely Body Pump, Body Combat, Pilates and Body Balance I also ran 4-5 miles twice a week so I was doing plenty of cardio and strength training. I’d also just started Reformer Pilates. I find I can’t do these classes now so I’ve frozen my gym membership. On my first letter from the consultant it says I have IgA k Myeloma with multiple lytic lesions and large soft tissue mass with endplate fracture at L3, so it was just too painful to continue my classes. My consultant told me no lifting weights or cardio for the time being. I’m lucky to have made a really good group of friends at the gym and I still meet them regularly for coffee and walks. I have been walking daily, at least an hour every day so hopefully this will help to ‘get things moving’.
Rabbit I note what you said about taking the Adcal within four hours of the Zometa and I didn’t take my first Adcal until the morning after the Zometa, so that should be ok. Maybe the nausea I had was just a coincidence or maybe it was linked to my constipation.
Thanks Bernard too, it’s interesting that you said new research shows that a quarterly infusion of Zometa has a more lasting effect I shall certainly ask about that when I next see the consultant on the 30th of this month. Although I’m really hoping that next time I have Zometa I won’t have the side effects! I know we all react differently to the various drugs we are on and I’ve been lucky with the lack of side effects so far.
Jo I’m like you and don’t like the idea of taking regular laxatives but I think we have to get used to it being the new kind of normal. I was very accustomed to drinking about two litres of water a day when I was going to the gym but it’s a bit more difficult now. I have to make a real effort to keep topping up my water bottle and having a drink when I’m not thirsty, it’s hard not to feel waterlogged!
Thanks again for all of your help.
Najmah
Hi all,
Last week I was given my first infusion of Zometa, I’m having it added on once a month. So in addition to this I’ve been prescribed a vitamin C tablet Adcal D3. I remember Jo saying she was also on Zometa. Is it a routine infusion that everyone gets? On Thursday I had my first taste of feeling fatigued and having nausea so I’m putting this down to the Zometa. Hopefully as I’m only having Zometa once a month I will be able to cope with it. Another side effect I’ve started to get is really bad constipation. My consultant said this is down to the Bortezomib injection I’m having every week. She prescribed me both a senna tablet and also a powder, Laxido. It’s been a bit of trial and error but I think I have this under control now. I’m not happy about taking the laxatives long term, though I may have to revise my thinking. I always drink plenty of water and eat healthily, I’m drinking prune juice now too! Has anyone any other tips on how to cope with constipation and if you’ve had it how long has it been before it settles down into a ‘normal’ pattern?
Thanks
Najmah
Hi Stevie,
Thank you for sharing your story. As rabbit says you have been through a lot, your myeloma and the other health problems you have had. I know that myeloma can present itself without symptoms. That’s what happened to my mum years ago, she was having a routine blood test for her diabetes when Myeloma was picked up. It was different for me though as I had unexplained back and hip pain.
You are so right when you say that many of us are carrying challenges that remain completely invisible.
I’m wishing you well in your next phase of treatment.
Hi Tiger,
I’ve just read your post. I hope you can have your MRI quickly and shows that it is not a relapse as you’ve certainly been through it. I hope too that your back pain was alleviated when you were in hospital.
Thank you Bernard for your encouraging and positive post. As you say treatment has moved on considerably in the past few years. My mum had myeloma 25 years ago and only survived ten months post diagnosis so when I was diagnosed in April this year I thought the end of my life was fast approaching! However my consultant said exactly the same as you, that what he was telling me wasn’t good news but it was by no means a death sentence.
I’ve recently finished my first cycle of treatment and so far I’m doing well with lack of side effects, although the Dexamethasone soon kicked in, giving me a few restless nights and very early morning starts😂.
Do you have any maintenance treatment? I’m wishing you well and hope your remission continues for many years.
Good to hear that fortnightly treatments have made such an improvement on how you are feeling Jo. Long may it continue.
