[485Participant]

Hi
Just browsing the newbies forum, and can relate to a lot of the posts re recent diagnosis, treatment, understanding treatment and how this impacts on our emotional, physical and psychological well-being.
I was diagnosed with MM (keppa)in 2017 age 48 following routine blood test for pre diagnosis of type 2 diabetes, wow so unexpected, became vey ill pre treatment and was told was anxiety or psycho somatic. However had an amazing response to my treatment – 7 cycles chemo 2017 and 1 stem cell transplant later in 2018.
Yes there have been ups and downs, tears, wobbles. My team at Blackpool have been amazing. Kept on 3 monthly blood screening, only had slight bone pain in my upper arms – feel very lucky. Carried on with life, full time work, family, holidays etc.
In June this year found out I had relapsed, however no changes in my physical symptoms. Mind blown as have a choice of 4 treatment options to choose from or MajesTIC 3 clinical trial. I have opted for the latter, having marrow taken, CT, ECG, bloods in next 2 – 3 weeks. Less than initial tests in 2017. Feeling stronger emotionally, physically and psychologically this time round. My mind set – prepare for worst anything else is a bonus. Thats me, just how I cope.
Lots of support out there, take it. Lots of research. As others have said, its hard not to get bogged down with all the info and understand all the terminology, Writing questions down as you go along helps for your consultations, take some else who may retain the info too, take pen and paer to the appts if needed. They’ve seen it all, so dont worry.
Happy to answer questions, anything I can help with if needed. All journeys are different but have common points too xx

• This topic was modified 2 years, 1 month ago by  tony642.

[rosaryParticipant]

Thanks for sharing your journey and best wishes for the next stage

I’d be very interested to know more about the 4 options you mention and why you decided on the trial – can you share more details about the trial

Thanks very much

[kh0305Moderator]

Hi 485,
Thanks for your post and pleased to read that you are feeling stronger. Good luck with the trial. Hope all goes well xx

[mulberryParticipant]

Good luck with the MajesTIC 3 trial, which drugs does this involve? It’s heartening that there are new trials going on again post pandemic to explore better relapse options.

[suzieqParticipant]

Hello – I am new to the forum, I am the sole carer for my husband (70 years young). He was diagnosed with MM in April this year. He had a stem cell transplant recently and has been in hospital for 17 days(so far) and is making good progress. He may be discharged next week if all goes to plan. What I would like to know/understand is what care is available in the community for MM patients? I am concerned he is too weak to manage the stairs at home (at present) and he will be totally dependent upon me for his care. Any thoughts/advice are warmly welcomed. Thank you.

[mulberryParticipant]

Hi Susieq, welcome to the forum, and I hope that your husband is soon ready to be discharged.
You don’t say whether your husband had any prior dependencies before having his SCT, but I’m assuming that he was reasonably fit prior to the transplant (to be considered as suitable for it).
If this is the case my experience is likely to be reasonably relevant.
I was very tired for the first 30 days after SCT and slept alot of the time. I would have found meal preparation difficult and relied on my husband to cook and clean, but I did not need help with personal tasks such as showering or dressing. In these early days I stayed in the bedroom as I slept much of the time. I could eat, but my taste buds were odd and I ate small quantities frequently rather than large meals. I often fancied simple things, not necessarily things I normally ate.
I felt noticeably better by day 35 and was able to resume meal preparation, household tasks and could tolerate increasing exercise until about day 80 when I was desperate to get away on holiday (which we were advised shouldn’t happen until day 100)
Most patients don’t require personal care by the time they are discharged from hospital, but if it seems to you that your husband will, talk to his team that are treating him, and request that a plan is put into place before your husband is discharged. When a myeloma friend was discharged recently (with mobility issues) a care package was put in place with carers going into her home several times a day for the first few weeks.
I hope your husband’s recovery is straightforward, and you can soon get back to enjoying a good quality of life.
Jane
PS your post has tagged on the end of another one, which may mean that it isn’t seen by some forum members.
In future can I suggest that you start your own thread within whichever category you feel best fits.

• This reply was modified 2 years, 1 month ago by  tony642.

[shamrockgirlParticipant]

Hello everyone, I’ve just registered to be part of this forum. I was diagnosed with Smouldering Myeloma in March this year. Not only had I not been familiar with Myeloma, but this smouldering part of it us quite rare & unusual too!

Though I do have other chronic conditions & class myself as having a disability, but last November, my fatigue levels got a lot worse & I began having to go back to bed many afternoons. I’ve asked the haematology nurse & my biologics nurse, for my Rheumatoid Arthritis, at recent phone appointments what they think was causing the extra fatigue. They both appeared to say they didn’t think it was to do with either condition. This has left me confused, that’s when I contacted the Myeloma nurse at Myeloma UK, who gave me some answers & pointed me towards this forum.

I would appreciate any responses on this, thanks.

[tony642Moderator]

Hi Shamrockgirl,

I am one of the forum volunteers and have MM. I am sorry to hear of your diagnosis, but there is a good chance that it might not go on to full Multiple Myeloma. In my experience, fatigue is par for the course with the disease even at the smouldering stage. Could I suggest that you use the ask the Nurse facility on this site, as obviously they specialise in the disease and might give you more information. Let us know how you get on.

Regards, Tony

• This reply was modified 2 years, 1 month ago by  tony642.

[richfsModerator]

Hi Shamrockgirl,

Like Tony, I’m a forum volunteer, and a myeloma patient. A good friend of mine has been living with smouldering myeloma for 3 years and has regular blood tests to monitor this. The longer you have smouldering myeloma, the lower the chance that it will develop to active myeloma, although that is always a possibility.

I am also in contact with a myeloma patient in the US who was diagnosed with smouldering myeloma age 45, which progressed to active disease 6 years later which has needed treatment over the years. That was 25 years ago, he’s now 70 and living a very active life.

Fatigue is, indeed, a major symptom of myeloma.

How are you getting on in your research about this illness? There’s so much to take in when you’re first diagnosed, the main thing to understand is that whilst myeloma can’t be cured, it can be treated, and thanks to this many people are living for many years.

Do reach out to us on the forum, we’re all in this together!

Rich 👍

[shamrockgirlParticipant]

Thank you so much, tony642 and richfs for your responses, helpful & useful. I am gradually learning about this disease, but as I’ve struggled with memory & retaining information, due to my other conditions, this is an ongoing process.

I’m relieved (if that’s the right word) to know that the much worse fatigue since a year ago, is highly likely related to the Smouldering Myeloma. At least I have something I can bring up again at this weeks “watch and wait” haematology phone call, from the nurse.

So useful and comforting to have this forum.👍

[richfsModerator]

You’re welcome Shamrockgirl, do let us know how you get on.

Hi ‘485’, just to say that I’m in a similar situation to you, now on 2nd line treatment after being diagnosed and treated with DVT and a SCT in 2019 (age 44). Whilst it was a shock to need treatment again, and created a lot of fear, I’m much more aware of the long term treatment options and feel that I can go through this line of treatment much more easily. I’ve been working, walking, cycling, swimming, gardening, etc. more or less as normal, just getting a bit tired and fuzzy from all the dex, but you’re right that it’s easier to face than the initial treatment after diagnosis when your whole world is in a spin. I’m glad that you don’t have any symptoms of concern, and wish you well in your treatment – do let us know about the trial.

Rich 👍

[tony642Moderator]

Hi Shamrockgirl,

This might sound an obvious thing to say, but if you learn something which you think to be important, write it down in a book, so if you forget what it was, it will always be there for you. Also, when you are having consultations either face to face or on the phone, and you have questions you want to ask or anything you want to know, write them down as soon as you think about them, as you will probably forget them at the time of the consultation.

Poor memory is par for the course for a lot of us suffering with the disease. It is very frustrating, and sometimes you will think you are losing your marbles, but you are not on your own. Its easy to say but it is one of things you have to learn to live with. Just let those close to you know that it is a problem for you, and ask them for a bit of tolerance with you as it is something you do not have control over.

Let any of us on here know if can help in any way at all, that`s what we are here for.

Regards, Tony

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