[marialParticipant]

Hello all,

My name is Maria and I was diagnosed with Myeloma just before Christmas and having sought 2nd and 3rd opinions on the treatment pathway, start my treatment VTDD this coming Wednesday. Like others on this forum, I’ve been healthy all my life, and only stay in hospital was to give birth to my daughter and left after 3 hours. Pescatarian, non-smoker, hardly drink, exercise and then this. I’ve come to terms with it but would really appreciate connecting and hearing others experiences with this treatment as I have barely taken a paracetamol so the onslaught of all this, is rather daunting.

Thanks

[kenbParticipant]

Hi Marie,
I was diagnosed with MM & plasmacytoma in July 22 after an initial diagnosis of sarcoma in March 22.
Like you, I was fit, rarely drank and ate healthily.
After an Intermedullary nail in my femur & some radiotherapy, I started on Dara – DVT. 4 cycles, one after another that I finished last month. I suffered dex sleepless nights on the days I took it and fatigue was my biggest side effect. I worked throughout but did have to take the odd day off as I was so tired! As soon as the cycles ended, back to normal and if I’d known no better I’d think there’s nothing wrong with me.
I’ve had stem cell harvest and now waiting for high dose chemo/stem cell replacement.
Good luck with your treatment and hope you are lucky like me for a side effect perspective.

[lilibParticipant]

Hello Maria,
I am sorry to hear that you got this news just before Christmas, although I suppose there’s never a good time. My husband was diagnosed in July 2021, so we effectively got an extra year of lockdown. I found it helped us both for me to organise the medication schedule as a sort of diary, and I also noted things that happened on it. This turned out to be very useful to the hospital staff later on when he had his Stem Cell Transplant.

There have been one or two hiccups, but I learned that it is important not to panic if one of the drugs disagrees with you – there are alternatives. Get to know your Clinical Nurse Specialist as she/he will be a wonderful support during your treatment. Best of luck with it all, and hope that you will be in a very good place soon with your treatment.

Lili

[marialParticipant]

Thanks kenb, that is encouraging to hear and will see how I go on Wednesday. Fortunately I am flexible re work so that is one pressure I don’t have although from a mental perspective I feel I need to have the distraction so the MM doesn’t completely take over. Your experience sounds manageable so will stay positive and hope that my journey is also similar from a side effect perspective. All the best with the high dose chemo/transplant and hope you have a long and deep remission.

[marialParticipant]

Thank you Lilli, that’s good advice. I’ve already set up “Project Maria” to track my journey as well as symptoms, medications, clinical trials, etc that are currently underway. It’s a time when I guess being organised is crucial. I had no idea what to expect signing onto the forum but even after a couple of responses I can appreciate the value of connecting with people who are going through this. Thank you so much

[mulberryParticipant]

Welcome to the forum.

In many areas there are local myeloma support groups that enable patients to have face to face contact and friendship with other people living with this disease.Myeloma UK has a list of these on the website if you think this may be useful for you.

We all share the experience of being profoundly shocked to get this diagnosis, but with the treatments now available and with even better ones in the pipeline, many of us can anticipate leading pretty normal lives over many years.

For some years now I’ve described myself to my consultant as a fraudulent patient- I hope you will come to feel like this too!

Jane

[marialParticipant]

Thank you Jane, I too hope I can describe myself as a “fraudulent patient” in time. Crazy thing being I feel well, no pain or other symptoms so hope this continues.

I have looked at the local support groups and although there’s not one in Richmond, there are a couple not too far away so may explore this once I know how I react to the treatment.

This forum has already been so valuable and I appreciate the time people have taken to respond. Thank you!

[dawnParticipant]

Hey Mariel

So sorry it’s a journey to say the least…however myeloma treatments are improving constantly and I’m sure once you get your head around it you will be ok.

Sadly it is a rubbish cancer but I’m sure you will give it the punch it deserves just keep strong ok x

[marialParticipant]

Thanks Dawn, the journey starts on Wednesday with my first treatment and I’m certainly going into it with a positive mindset x

[kh0305Moderator]

Hi Maria,
Sorry to hear of your diagnosis and I’m sure it has come as quite a shock. Just echoing what others have already said, MM is very manageable and though there are side effects to the treatments (for my dad the dex insomnia and some gastro issues with Dvd so he was changed on to IRd which agrees much better with him) once you are through and into the maintenance period, you can live a pretty normal life. Dad was diagnosed back in January 2013 and treatments have moved on so much over this time. I hope that you don’t suffer too much with side effects and you’re soon back to life as usual, albeit with a slightly different slant. Ask as many questions of your medical team as you need and I found keeping notes very helpful during consultations as there are so many terms to get your head round. Good luck with the treatment xx

[marialParticipant]

Thank you kh0305, it’s now my third day since I started and apart from dex insomnia which hopefully I won’t have this evening (no DEX today), I seem to be doing ok but don’t want to fall into a sense that this is it. Can anyone tell me whether the side effects get worse over time?

[tony642Moderator]

Hi Maria,

I am one of the forum volunteers. I am sorry to hear of your diagnosis, it comes totally out of the blue and completely as a shock to a lot of us, myself included. The good news is that whilst it is not a curable disease. it is treatable, and there are some very good drugs and regimes out there, and if you have one that doesn’t particularly suit you, then there are others to try.

I had a stem cell transplant 3 years ago, and since then I have not had any detectable cancer in my blood, and I am tested every 3 months. I hope that it will continue like that for a long time to come.

Please keep us informed as to how you are getting on, how you are feeling, and if there is any particular way in which we can support you. Everyone on here is either living with the disease, or is a carer for someone who is. We all want to help where we can, so if you want to know about personal experiences, or just someone to have a moan to about it, then thats what we are here for.

Stay positive and keep your chin up.

Regards, Tony

[marialParticipant]

Thank you Tony, I must say that the forum has become an extremely useful resource and support from others going through this. I do have a question around the use of CBD oil to help with sleep as I’ve not been able to sleep well since my first treatment last Wednesday. I’m on VTDD and there is so much conflicting information online, I’m not sure if it’s worth taking CBD to help me sleep. Has anyone had any experience with this and should I post this somewhere else on the forum?

Really appreciate all your support!

[tony642Moderator]

Hi Maria,

Thanks for the response. I am sorry but I do not have any experience in using CBD oil. Have you tried using the ‘Ask the Nurse’ facility on this website? this puts you in contact with specialist MM nurses who I am sure will help you with information about CBD and whether or not you should use it. Just look under ‘Help and Support’ at the top of the page.

I would be interested to know the result so that I can pass it on to anyone else that asks, can you please let us know what you find out.

Onwards and upwards!

regards, Tony

[mulberryParticipant]

Hi Maria, I tried CBD immediately after diagnosis, (before treatment started, 3 months later, as I changed hospitals). I found it damped down the trauma of diagnosis for me. The analogy I’ve used is that I felt I was in a small boat in stormy waters, the CBD literally immediately calmed the waters down. I didn’t find that it helped enough with sleeplessness as I kept waking up. Like you I had not taken medicines previously but in the end I resorted to a short term prescription of zopiclone. The zopiclone broke my cycle of not being able to get to sleep, and I felt I got a good night’s sleep. I think I used zopiclone continually for two months (until treatment actually started) then a half dose occasionally, but I haven’t needed it since my MM treatment started working- I’m now nearly 5 years post diagnosis.

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