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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
I responded to this last week but can’t find my message???
Have you received a recent message from me? If not, goodness knows where I posted it 😂
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.
I’ve checked the other boards so can only think I didn’t submit it. No matter.
How lovely to celebrate a Golden Wedding anniversary. Many congratulations to you both.
My husband is still battling on thank you.
I’ve had about 10 good days and begun to feel human again. Respite from side effects makes all the difference and fortnightly treatments seem to have made the difference. Life is good.
Bloods taken earlier so 🤞🏻for further improvement.
Good to hear that fortnightly treatments have made such an improvement on how you are feeling Jo. Long may it continue.
To all of you that have recently been diagnosed, once you get over the initial shock there are positive areas to consider.
I was diagnosed in 2014 and my initial
Treatment was fairly brutal (I was also working full time, travelling and determined not to take time off sick).
Things have moved on hugely in the last few years with better drugs, which have less impact on you and work better. The research in the last few years has been amazing and your chances of longer term survival are higher now than they have ever been.
Stats back in 2014, indicated an average survival period of 5 years (mind you the data back then was poor!) but I am still here and if I was diagnosed today I would expect a longer survival period.
The initial shock of diagnosis is scary but it’s not a death sentence.
Good luck to you all.
Thanks for that Bernard. Always great to hear from someone who’s gone through months of brutal treatment and reached the other side.
You are right in that the survival rate is much improved these days and certainly the rate at which new treatments are appearing tells me there’s a lot of research going on.
I’m taking one day at a time and keep reminding myself that whilst I can’t yet see the light at the end of that tunnel, I am confident it is there.
Long may your remission continue and thank you again.
Jo
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.
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 Najmah,
You mention a few different things.
– Yes, Zometa is a routine infusion that people usually get.
– The advice that I got from my nurse was that it often causes “flu like symptoms”. Fatigue is consistent with that, and it caused me fatigue. Nausea is not a Zometa side effect that I am familiar with, though.
– I just read up on Adcal using Chat-GPT. It contains both Calcium and vitamin D3. Chat-GPT then went out of its way to say not to take it within 4 hours of a bisphosphonate (such as Zometa). I am just passing the message on.
– Yes, Bortezomib can cause constipation. You are doing pretty much all the right things. The only extra thing that I can suggest is – if you are able to – is to exercise. For me, constipation came and went a bit.
– Another thing to mention. If you are taking vitamin C supplements or green tea extracts, don’t take them close to (within a day of) Bortezomib, as they can stop it from working.
I hope that this is some help.
Regards
Rabbit
Hi Najmah
A couple of comments. Zometa. I’ve had this for 12 years now with no side effects. Of course we all react differently to drugs but any reaction you have may be short lived. I use to have it monthly but now quarterly as ‘new’ research indicated the effects lasted longer than previously thought. You should ask if quarterly zometa is something you could opt for. It’s there to strengthen your bones.
Adcal is fine. I just need to remember to take it. I hadn’t heard about any impact of Zometa from adcal so I would question that with your consultant or CNS.
Good luck
Bernard
Hi Najmah
I constantly battle with constipation which is not surprising as it’s listed as a common side effect on every pill and potion I take. In my case morphine has been the biggest culprit but several other drugs contribute. I’m not aware of any particular side effects caused by my monthly bone infusion though.
Like you, I’ve been prescribed laxative powders and these do require me to drink at least 2.5-3 litres of water per day, not as easy as I’d first thought! I also, very occasionally, take dulcolax. Prune juice can be effective too. Mainly I get through by increasing my intake of leafy green veg and raising my fibre intake because I don’t like the idea of regular laxatives.
Sounds like you’re already doing as much as you can and you may well find that things eventually settle down.
Keep hanging in there.
Jo
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
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