[kh0305Moderator]

Hi Ethan,
Thanks for the update. Good to hear all going mostly smoothly so far and hope it continues to do so. Do keep us updated with your progress as you recover. Hope you are feeling much better soon xx

[kh0305Moderator]

Hi,
Sorry to hear that your husband has relapsed. It is unfortunately the nature of the beast and we are currently going through dad’s 3rd line treatment after he initially had 7 years of remission post SCT, so I appreciate how disappointed you feel at the relapse. Hope the MRI goes well and that subsequent treatments get the MM under control again quickly.
Stay positive xx

[kh0305Moderator]

Hi LottieSo sorry to hear about your brother in law. Sending lots of love to you and the family.
Thank you for the update. It’s fabulous to read how well everything has gone for you and hope it continues to do so for you. Dad was on lenalidomide maintenance when it was being trialled and he had a great 7 years remission post SCT! Keep us updated xx

[kh0305Moderator]

Hi Julie,
Sorry to hear about your mum. Sending much love to you at this sad sad time. If you need some additional advice/help, the info line 0800 980 3332 can help to point you in the direction of some support to help you navigate through this difficult change.
Wishing you all the best xx

[kh0305Moderator]

Hi
I would just echo the above and say speak with your medical team as ours have always been really helpful in adapting and giving advice when dad has gone away which makes things that bit easier and more enjoyable! xx

[kh0305Moderator]

Hi jm,
I’m afraid I don’t have any experience of live vaccines post SCT. What were your haematologists thoughts? It would be interesting to hear of anyones experiences. Sorry I can’t be of more help but hopefully someone on the forum will be able to share their experiences xx

[kh0305Moderator]

Hi Maria,
Sounds promising with the nytol- hope that continues to work for you. Keeping my fingers crossed it does and you get back into a more regular sleep pattern and that will no doubt help with the anxiety too if you’re feeling more rested. Take care xx

[kh0305Moderator]

So pleased to hear that Richard is feeling bit better and you are feeling more positive. It will get easier and we are all here rooting for you xx

[kh0305Moderator]

Hi Maria,
From my experience with dad, his side effects haven’t got worse per se, but they have changed over the course of his treatment. For example, the digestive side effects are milder but he has issues with memory now which he didn’t have at the beginning. Sadly he’s never found a way around the dex insomnia but did have some luck with changing the timings slightly of when he was taking the meds but now just anticipates it and allows himself extra time to catch up with naps. Not ideal but helps a bit.
Hope you find some help with the CBD or an alternative as its never fun being shattered 🙁 xx

• This reply was modified 1 year, 9 months ago by  kh0305.

[kh0305Moderator]

Just saw those – a lot in a short space of time! All removed. Thanks xx

[kh0305Moderator]

Hi Yvonne,
Sorry to hear of the diagnosis and I fully appreciate how scary it must be watching your partner in such pain and distress 🙁
Dad was diagnosed in 2013 after suffering with rib pain for a long time and suddenly going very rapidly downhill. It was a horrible experience seeing him go from a fit healthy 62 year old to a withered skeleton seemingly overnight! But I’m pleased to say that he’s still with us, still able to go on caravanning holidays and walk the dog and was in full remission for 7 years following his first line treatment so don’t lose hope. MM is a very treatable cancer with treatments moving forward all the time. Sending best wishes to you both and hope your partner is feeling less uncomfortable soon xx

[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

[kh0305Moderator]

Hi Roger,
I’m afraid I haven’t any experience of Finasteride alongside IRD, just Alfusosin but Im not sure if that’s much help as I’m not sure how similar they are. Have you had problems with the combination of the IRD and Finasteride? xx

[kh0305Moderator]

Hi Suzie,
Glad to hear that no issues have been found. It will put you mind at ease too.
No need to apologise at all – just pleased to hear all is well xx

[kh0305Moderator]

Hi Graham,
Good to hear the positive news following the first cycle and that you are feeling happier now that you’ve been given more information and seen some good results. Hoping the second cycle goes just as well and that the calf is feeling better! xx

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