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.
No Jo, didn’t receive a message, maybe you posted it on another board🤔😂
Hope you are still doing well and that your husband’s back is improving.
We were away at the weekend, celebrating our Golden Wedding anniversary with all of the family, we had a lovely time and I hardly thought about Myeloma for the whole weekend!
I’m at the Freeman tomorrow but it’s just a short afternoon appointment for the injection as starting tomorrow and lasting until the end of the year my weeks alternate, one week just the injection the next week the full day for the infusion etc. From next week I’m also having the Zometa infusion added on once a month.
Hi Nicolac,
I just wanted to say hello. My treatment is also being carried out at the Freeman in Newcastle. I have found them so far to be excellent. I can’t have a stem cell transplant because I’m 73. Im receiving Isa-RVD and have just completed my first cycle. So I’m at the Freeman every Tuesday. There’s certainly a familial risk for you as there is for me as my mum died from it 25 years ago, only 10 months after her diagnosis.
Good luck with your tandem stem cell transplant, hope everything goes well.
Hi Jo, thanks for asking. I had my treatment yesterday, it was lovely and cool on the ward as they had the a/c on full blast. I saw the consultant first and she told me that my last blood test showed a drop in the myeloma blood markers, it has come down from 90 to 65 which is good news and shows that the treatment is working. She repeated all of my blood tests so she could get a better measure of the paraproteins and light chains and she said she’d let me know what they are via a letter.
From next Tuesday I am alternating going for the Bortezomib injection and having the full days treatment. I think that’s on my schedule until the end of august then I have a block of days cases.
The only side effect I’m having so far is that the Dexamethasone is disrupting my sleep. I was awake at 3am this morning and had to get up at 4am. A couple of weeks ago I had some constipation too (down to the Bortezomib apparently) so I was prescribed some laxatives and they seem to have settled me down.
How are you doing? How is your husbands back?
Najmah
Hi Jo,
Good to hear from you. I’ve just googled Dexys Midnight Runners, so they were taking it for fun as apparently lots of people were in the 60’s😂 I did find that after taking the tablets on Wednesday morning I had a bit of a restless night. I had some very vivid dreams, verging on nightmares! Then I woke at 4.30 with all sorts of thoughts running around in my head and I had to get up. So I had all of my cooking and housework jobs done by 7.30am. Hopefully it was a one off!
I take 10 2mg Dexamethasone tablets on Tuesday, my treatment day and then the same on Wednesdays.
Good to hear that you have moved to fortnightly treatments, and also that your Paraproteins are too small to measure, that’s great news. It’s also very encouraging that your weekly injection have stopped. It’s all very encouraging news, I’m pleased for you and you must be pleased too. I haven’t had any nausea or tiredness yet but I do expect it will come at some point. As you say all you can do is take the anti nausea pills and rest when you feel tired.
Yes Tuesday is the last day of my first cycle, I’ve just been up to the Freeman this morning to have my bloods done as my GP’s practice made a mess of my appointment and phoned to say the nurse couldn’t do them. So I thought the safest way to make sure it was done correctly and on time was to get the bloods done at the hospital. It means a 20 minute drive each way but it’s worth it for peace of mind.
Hope your husband is improving.
Warm regards,
Najmah x
