[JandKParticipant]

Please can anybody tell me if other MM patients experienced really really low moods a day after the 4 dex days ? I don't know whether it's just a low day or whether it's the drugs or whether both ?…

Jo

[piatkazParticipant]

hi Jo

Dont worry I think we all suffer from this it's the period you are coming off the Dex it can last for 2-4 days for me more tired than low but very irratable.
Ian

[JandKParticipant]

Thanks Ian he is very low not irritable it's as if he doesn't want to go on, very weepy .. we are only 26 days in and this is week one of the first 3 week cycle ? It's so hard

[jillsParticipant]

Hi Jo,

My Mum always had low days after finishing the dex days, and they were much worse earlier in her treatment as they were combined with the depression she had developed as a result of being told she had myeloma. At one stage the doctor offered her anti depressants but we didn't take them as it would have been one more tablet to add to the vast collection – and she had enough of those to deal with.
All I can say is that it does get better, particularly when you start to see that the treatment is working. My Mum is 84, was diagnosed 6 years ago and is still going strong – she is currently off treatment and feeling very well. Hope you can take some cheer from knowing that the treatments normally work…!
All the best,
Jill

[JandKParticipant]

Thanks Jill this is really positive …I think it is a combination Keith had his new retirement ahead of him after 40 years as a GP and now he feels his life is over .. It's made worse by the fact he has a collar on because he has lost C3 vertebra and we don't know what is going to happen about that as well .. He used to go to the gym 3 times a week…

Thanks Jo

[piatkazParticipant]

Hi Jo yes it is early days for you and will get better,I am on 4 days of dex at 20mg/day I have always suffered with Dex so a few weeks ago my specialist mentioned I should only take 12mg on the last day then take the folowing 8 mg the next day that was last week and it was alot beter,mention it to your specialist I'm doing the same this week and hoping it wasnt a one off.One bit of advice is if he's feeling tired durring the day tell him to go to bed and sleep dont fight it
Ian

[JandKParticipant]

Thanks Ian

I will bare this in mind when we go back after this first cycle of hell !!

Jo

[eveParticipant]

Hi Jo:-D 🙂

Welcome:-)
May I suggest you contact Ellen or Maggi at the free number at the top of this page8-)

It's very early days for you,but as your husband was a GP,he is no longer looking through rose coloured glasses,so I would imagine he is finding it very hard plus he does not want to upset you too much,so you are both worrying about upsetting each other. This is the time to talk!!! Big time,let him talk as it is him who has terminal Myeloma.

I can only tell you,there is life after being diagnosed !!!,may be it's not what you planned,but does that matter make other plans,but you first priority must be to learn all you can about Myeloma,people will tell you it's a roller coaster,do learn to live with the highs and lows,enjoy today and do not worry about tomorrow,
As hubby is on trials he will not be allowed to alter the patten of taking steroids,but if he is on 40m it can be lowed to 20ml,but my advice if he can live with the regime,it will be more effective.
Good Luck Eve

[JandKParticipant]

Thanks eve

We talk a lot Keith doesn't choose to be on here … It's not him … My sister and daughter are doctors I am fully aware of the beast !!!

Jo

[JandKParticipant]

PS I just need positive stories for now to help him through the journey of acceptance

[piatkazParticipant]

Hi Jo

Theres lots of encouraging stories on this site I persomally thought it was the end of the world for me but here I am 6 years on and feeling well the treatments and drugs are improving and new ones being devoloped I feel more positive now than when I was first diagnosed,keep positive it does take a long time to adjust.
Ian

[JandKParticipant]

Ian thanks I know …

I have read everything there is to read I am under no illusions… I am fully aware Keith knows everything too but he has a tendency, because of his medical knowledge, to only see the negative …so if I secretly ask questions on here, which I can do on my iPad :0) and get some longevity examples it really motivates him x you are helping me lots thanks very much … I have experienced cancer myself and have lost family very young to cancer so I know more than most where we are at …keep it coming and hopefully I can repay you with positive outcomes ..

Jo

[piatkazParticipant]

Hi Jo

you will with time,any questions just ask weve all been there on this site but you need to accept it if you feel better e-mailing me I'm on piatkaz@aol.com or I'm on facebook
All the best Ian

[JandKParticipant]

Thanks I may do … I struggle with fb post diagnosis I'm not as fun and posting feels wrong

[JandKParticipant]

For all those people who have decided to speak to me privately thank you .. We only need positive feedback at the beginning we can take our time to digest negativity … X

[Author]

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