Advice please

[SRH55]

Hi,

I wondered if any of you could help me, I’m asking for a friend of a friend & I know a lot of you are very knowledgeable about blood cancers. This person has been diagnosed with multiple myeloma, he knows it’s not curable but treatable, similar to an mpn. I believe it’s not an mpn, unless any of you differently? He has got himself into a state of panic, I don’t think he can accept what his consultants are saying. I remember when I was first diagnosed & how I felt very unsure about things. Any advice would be very much appreciated.

Thank you,

Shirley

[Otterfield]

I don't know a great deal about multiple myeloma, but I have a friend who has it. He had an autologous stem cell transplant about 4 years ago and is now very well and in remission. It can come back but I think they can treat it again.I also know a lady in her eighties who has it, also in remission and in good health.

Hope this reassures your friend

[SRH55 in reply to Otterfield]

Thank you very much for your reply, I will let them know through my friend & hopefully it will reassure them. I believe that if you hear of someone that is doing ok it can make you feel better, thanks again.

[hunter5582]

I don't know much about multiple myeloma but certainly can understand the shock and panic one can feel. I think we can all understand what it is like to find out you have something for which there is no cure. I think the most important thing is to be there for your friend until he can wrap his head around what this means. It takes some time

If you think it would help, please share this with him.

Coping with Medical Issues

I was diagnosed with Neurofibromatosis Type 1 over 30 years ago in my early 30s, over 30 years ago. I was also diagnosed with Essential Thrombocythemia about 30 years ago. It progressed to Polycythemia Vera about 8 years ago. These are Myeloproliferative Neoplasms (MPN) a type of blood cancer. The NF1 lead to a brain tumor that I had to have resected back in June 2019. A year before that, I had to have a heart surgery for tachycardia (catheter ablation). There have been other recent surgeries as well as issues with the outcome of surgeries. One of my new adventures has been visual migraines and palinopsia. It has been an interesting couple of years.

So how to cope? I think we all find our own ways. Here is what works for me.

1. Support from family, friends, and faith community.

2. Support groups/forums for MPNs/NF (my friends and MPN/NF families)

3. Maintain your sense of humor and find ways to have fun no matter what.

4. Surround yourself with things that are positive and lift you up.

5. Mindfulness practices - I practice Qigong.

6. Say the Serenity Prayer every day and take it to heart!

7. Educate yourself about your condition(s). Knowledge is power.

8. Create a high-quality treatment team who you trust.

9. Advocate for yourself. Assertive patients receive higher quality care. Passive patients do not. Remember that you are in charge of your care. It is your goals, priorities and preferences that must drive your treatment. Empower yourself to deal with the conditions you face.

I have been blessed to have relatively indolent forms of a MPN and NF1. I have led a long rich life and plan to continue to do so despite what happens with the MPN/NF1. Sure - there have been some challenges with the MPN, the NF1 and the other related and unrelated medical issues I face. Sometimes you do, as the military folks say, have to "Embrace the Suck" or "Suck It Up Buttercup.” However, it is not all "Suck." There is plenty of good in life to enjoy and embrace. As the prayer says, I seek the serenity to accept what I cannot change, courage to change what I can, and wisdom to know the difference.

More than anything, know that you can manage this. There are ever-more treatment options and very real hope for treatment improving in the foreseeable future. You can put together a plan to manage the condition(s) you face. Have confidence that you will be one of many who do manage the challenges successfully. You have got this!

Do not just survive – THRIVE!

[SRH55 in reply to hunter5582]

Thanks Hunter, good positive advice, as usual. You certainly have had some health issues but it’s good you can remain positive. It does take a while to accept things. I was diagnosed with ET in 2009, now MPL positive & remember it took a while to get my head round things.

[Ekkles in reply to hunter5582]

Magnificent! Thanks for sharing

[IrishHiker]

healthline.com/health/multi...

Hope this link helps. My cousin was diagnosed with it a few years ago. She is still doing well all things considered.

[SRH55 in reply to IrishHiker]

Thanks, I will pass the link to them.

[lizzziep]

My friend has multiple myeloma, she was diagnosed several years ago, she had a stem cell transplant and started on a clinical trial from Freemans hospital in Newcastle, she has been in remission since then. Good luck to your friend

[SRH55 in reply to lizzziep]

Thanks for that, I will pass that on. I’m glad your friend is doing well.

[JediReject]

Hello , , I'm sorry to read of your friends friends MM diagnosis. I'm sure things will become easier to cope with once the initial shock subsides and he is given a treatment plan.

It might be worth him signing up to the Myeloma UK Forum on Healthunlocked for support. I have no experience of it but it will likely operate just like this one and he will soon see he isn't alone which was what I once thought with my MPN / MF until I discovered this site.

Regards -Chris

[SRH55 in reply to JediReject]

Thanks for that, I wondered if there was a forum. From what my friend says, it seems to be taking over their lives at the moment, which I know can happen.