peter g. Hello. I have recently been diagnosed with MM and am due to start my treatment next week. It all sounds quite daunting especially the possible side effects. Any advice as to how you deal with this would be greatly appreciated. I am trying to be positive and some of the posts l have read on this forum are very reassuring. I like to keep active but the lower back pain l have been experiencing is restricting me. Thank you
Hi @petergreenfield and a huge welcome to the group. That’s so much for you to take in and it’s sounds as though it has all happened so quickly. I think daunting describes it well! I think we all remember those initial thoughts and feelings and the whirlwind of emotions.
I had radiotherapy for lymphoma so can’t comment on the chemo. However, I know there will be lots of people who will be able to share their experiences with you.
Remember to use the support line (Blood cancer information and support by phone and email | Blood Cancer UK) if you need to. Sometimes it’s good to hear a voice on the end of the line - just for a chat.
Do you have a good medical team around you who can answer all off your questions?
Hi @petergreenfield I am so glad that you have found us and I cannot help you medically but what as @Nichola75 says we all remember those feelings at diagnosis and for me I was in shock for a very long while, I felt in a sort of bubble with the world going on around me. I could not explain to work what I did not understand myself.
As for starting treatment next week I expect that adds to the unknown scariness for you.
I hope others will be able to share their experiences and side effects but it is worth remembering that we are all unique and experience things differently.
I am glad that you like to keep active, so do I and I also believe in fresh air, but be kind to yourself and just do what you can, you and your body will be going through a lot emotionally, physically and practically.
We are here to support you so please keep posting and if you would like to speak to someone the support line number is above.
Hi Peter I was diagnosed on 18th May last year. I was ( ironically ) a nursing sister in a Fracture unit and thought I had pulled a muscle in my back. After 6 weeks of agony I realised it wasn’t a pulled muscle. Following MRI it was a crush fracture of one of my thoracic vertebrae. I had 5 consecutive days of radiotherapy…… no issues worth talking about maybe a bit exhausted travelling in an ambulance each day but other than that it was ok. I had Velcade Chemo for 3 months and the worst part of that for me was the steroids they give with the chemo…… I hated them as they made my brain feel wired up and I had difficulty sleeping. But the chemo itself caused fatigue which I coped with and really no other awful side effects. I have had my stem cells harvested back in April and was hoping to have SCT early May beginning of June but my bloods are not behaving and I will know on 19th July if I need a bit more Chemo before the transplant. This is my experience so far Peter…. I wish you well on the next part of your journey and I will fill you in following my appointment on 19th July.
Hi @Danmar . That’s a lot going on and a lot still to happen. I hope you are looking after yourself. I hope you get some positive news about the stem cell transplant in July. How are you feeling about things?
Hi Peter I was diagnosed with myeloma last April and was subsequently given chemotherapy via pills including Thalidomide. After a few months my legs were swelling considerably and a decision was made to take me off Thalidomide and try another medication. This worked. I was on the chemotherapy until the November. It took a few month afterwards before I really felt human again but looking at me now you wouldn’t believe there was anything wrong with me. I now only have infusions for bone marrow and calcium every three months and have my bloods taken also. I did find I also suffered from sleeplessness and increase in body bloating but also felt physically tired. Unfortunately with the lockdown. And some severe weather it took a lot to try and make myself more active than I was. I would potter around my home but going outside I found hard because I also developed breathing problems. All I can really recommend is if you start to feel down don’t hold it in discuss your issues with someone you know is ready to listen. I found they didn’t need to give advice it’s being able to unburden yourself of any concerns is a great help. We are all different how we cope with the treatment and I so wish you well
Hi @Danmar your diagnosis must have been rather a shock to put it mildly and your whole experience of being a patient must certainly have given you an insight of how patients think and feel.
Yes, please do let us know how you get on on July 19th, I just hate the waiting.
Take lots of care you as your body have been through a lot and my experience is that it takes a long while to replenish my batteries.
Thanks @Vmj6 for your experiences and you show so well that by letting your medical team know about your side effects that they gave you alternative medication that is better suited to you.
You also show how treatment does take a toll on your body and it takes a long time to build back up again.
Thanks also for reminding us to talk to someone who doesn’t give advice, but that is just there for you. I have had counselling in the past and it certainly did help me.
Unfortunately sometimes friends, just try and make it better (to make them feel better actually). That is another reason I feel that this forum is so special.
Hi @petergreenfield, I was diagnosed in Oct of 2020 with mm. I had been suffering with shoulder and back pain for quite some time as my docs didn’t diagnose. I paid for a private consult. and got the news. I was devastated, cried a lot and thought things were pretty desolate. I felt in a bubble not able to be in the real world. Once I understood how amazing the treatment now is for this disease and that you do have a future (contrary to some info. courtesy of Dr Google), things do start to get a bit more normal. Treatment and feeling better becomes the main focus, there’s a lot of appointments! As a few people have already mentioned, the chemo is pretty tolerable. I had Velcade injections, cyclophosphamide tablets at home and dexamethasone steroids. I was able to do the velcade injections at home after a while which saved me having to troop to the hospital every week, definately recommended. Chemo made me a little woozy and the steroids do keep you awake. On the bright side you can be quite productive taking steroids but you do feel knackered when they wear off! The treatment does however help with the pain as it clears the myeloma cells, although I do have some permanent back pain which should be addressed after transplant. I had 8 full sessions of chemo and have just had a stem cell harvest in view of a transplant in August. Looking back the docs have to tell you all the possible side effects but it’s the same as reading any warnings on tablets, it’s unlikely you will experience all or many of them! This site is great for support, I found it later into my journey. The Healthtree Myeloma Crowd (US site) was the first site I used, also excellent for info. Take Care of yourself it’s not as bad as you think, promise…
Thanks so much @Lyn99 you described exactly how I felt at diagnosis, that bubble with the world carrying on as normal around me.
I would also advise against Dr Google, I have exceeded their life expectancy for my blood cancer by a good 7 yrs and in that time research and trials have come on in leaps and bounds.
Yes, the docs do have to advise about all possible side effects of a treatment, which is pretty scary. Yes, I always laugh at all medications warnings when they advise that the side effects are constipation and diarrhoea, there is quite a difference I can tell you.
Whilst waiting results or treatment my mind goes off in all directions and is always far worse than the reality.
Take care everyone.
Hi @Danmar It looks like we’re on a similar road at the moment. My sct should be August so could end up being similar time scale if your bloods are still being difficult and you need more chemo. I do hope things settle down for you and that you find out a little bit more info on the 19th. Best of luck. Take Care
Thankyou @Erica, here’s to many more years! I’m so pleased that you have proved Dr Google wrong. You are so right when you say about medical science moving forward, more options are being researched all the time and this is a very positive outlook for all our futures.
Yes thank you Nichola
Thank you Lynn99 I will let you all know what’s next after my appointment. Keep well
Hi Erica. Yes big big shock!! I knew very little about MM and it was different on the other side. But I was an inpatient for 13 weeks due to pain control and the staff were more than amazing in their field of nursing. I felt quite humble and had so much admiration for all the hospital staff as it was during lockdown last year…. They worked so hard
Hi @Danmar yes, all hospital staff from top to toe are brilliant.
Thank you all so much for your advice and comments they are so helpful
Be thinking of you this week. I hope your treatment goes well. Keep us updated - when you’re ready off course
New here . Just reading through. Will post more tomorrow
Nice to meet you @Mayo57. Look forward to hearing more about you