[julierennieParticipant]

Hi

I’m relatively new to this site and just wanted some advice.  I’ve just completed a course of chemo, it’s been the myeloma 11 trial with carfilimozib, dex, revlimid and cyclo.  It’s been a very rough ride for me and I’ve found it extremely difficult.  I’m now just waiting for the meds to get out of my system having had my last iv chemo last Tuesday.  The thing is that I don’t seem to be feeling much better still feeling nauseous and light headed and this is after a week and a half almost. I know that it’s all down to the individual but is there a rough guide as to when you can start to feel better. I was also interested in finding out how people have faired on the standard myeloma treatment, I’m worried that itcould be as bad as the treatment I’ve just completed.  I go for stem cell transplant in January. Does anyone have any advice, is it really awful? I’m so worried about it.

[VickiParticipant]

Hi there

From Colin’s treatment first time round it did take home some while to recover from the initial treatment. Tom fellow mm’ers said you will just turn a corner, like a light switch being turned. The SCT isn’t pleasant And it does take some while to build up the stamina again but be patient and build yourself up daily

Take care

Vicki and Colin xx

[julierennieParticipant]

Hi

 

Thank you so much for your response.  I think I may have turned that corner now, it feels great.  I was able to go to my daughter’s 5th birthday party today, a few days ago I didn’t think I be able to.    Following the stem cell transplant, when you were discharged from hospital, were you still feeling poorly or were you able to ‘function’.  I’m just not sure what to expect, the medics say a 3 month recovery period but are you feeling rotten for that time?

 

Thanks again for your reply.

Julie

[rebeccaRParticipant]

Hi Julie I had my SCt at Xmas last year – had my 52nd birthday in there to boot – as always how you respond to SCt is very individual and depends on complications I got an infection as soon as discharged which caused about a 6 week delay to feeling better I would say but when you “turn the corner” you know and you can function ok – altho I had setbacks think I was making dinners etc shortly after – I suffered a number of setbacks and sickness was the main one that prevented a very early recovery. I think without the infection then onslaught of stomach bug would have been fine in a couple of weeks. At 3 months could have gone back to work but decided to stay off for 6 months for 2 reasons – winter season of germy people at work and I wanted some “me” time to get full fitness back – was playing tennis at 3 months, brisk walking etc and was at full fitness, as tho nothing had ever happened, at 6 months – doing 20 mile hill walk. I have just read your posts and note how young you are so recovery will be no problem at all – will be speedy trust me. I also note you had high level of light chains on diagnosis with little impact to your body – this is a good indication you can manage well with MM and with lots of treatment options available to you. I would add, however, after SCT and recovery my mood went considerably down for a while and I thought it was because of living with the uncertainty of it all – but it wasn’t – it was because on treatment and leading to SCT I worked on mental attitude and living in the present, not going to the dark places etc but after SCT I thought life would go back to normal, work, etc as tho it never happened but this made it worse. I now know this is a life long commitment so I went back to al the things that helped me remain positive and happy throughout treatment. So just be aware to keep doing whatever you are doing to make you feel positive now forever. You have such a lot of options going for you with youth on your side I am sure you will with the people who benefit from a long list of future discoveries/treatment. Good luck

Rebecca

[julierennieParticipant]

H Rebecca

Thank you so much for your positive and informative response.  I felt a lot better when I read it. I have sct on 6 January so hopefully have a few weeks not on treatment where i feel well before i need to think about it. You mentioned about the nausia, can i ask how long it lasted for you. I was hoping that it would have passed by the time i was discharged.

Thanks again for your response.

Julie

[rebeccaRParticipant]

Hi Julie, remember everyone is different and I seemed to have constant nausea and sickness whilst in even tho they will try a range of meds to stop it – some people just get it a bit – think I was in 16 days came out the 28th dec and remember feeling well/turning a corner on xmas day and really enjoying my dinner and was fine on discharge but once I got an infection which dragged me down I got really extreme S&D also that lasted a while but if all goes well for you you should feel fine on discharge and continue going upwards. I think I was just unlucky getting a couple of things that was a bit debilitating – without it I believe I would have been up and about and absolutely fine really early on.

[christaylorParticipant]

Hi Julie, read your post and wish you all the best with the SCT,  I hope to do the same in the near future,  when i was diagnosed with MM back in June I chose the standard treatment not sure why I think I was still in shock at that time and had little time to make my mind up. Anyway I am on my 7th cycle of CDT and my kappa light chain has reduce from 1200 to 34 albeit I still await for blood result from cycle 6 so could be somewhat lower, hence getting near to SCT.

The ride on CDT has been a roller coaster, with the side effects, taste buds yuk, constant battle with constipation but managed to keep it under control, terrible shakes caused by the Dex steroids being on a very high dose,these have now been reduced by half so hopefully the shakes will reduce. Oh and my ankles keep swelling and go a funny shape so sometimes I wear tight flight socks to help keep feet in shape.  So that is a slight insight as to the standard treatment but it is like others say it’s very individual, my own opinion at the moment is that if I can get to SCT and get into some sort of remission then it was all worthwhile.  I hope all your side effects soon disappear so you can enjoy a more normal daily life especially with Christmas looming, Good Luck.

Chris.

• This reply was modified 9 years, 11 months ago by  christaylor.

[julierennieParticipant]

Hi Chris

Thanks very much for your reply. I know what you mean about the shakes when taking dex., just a couple of weeks ago the side effects of this steroid became really awful, felt very agitated and generally anxious and unwell. I’m finished treatment now but still not feeling great. I’ve been prescribed Fluoxetine for anxiety which i think is causing sickness and light headedness but not sure, hoping that it’s not still the side effects of chemo. It seems like you have responded really well to treatment, i hope it continues for you.

Julie

[julierennieParticipant]

Hi

Just been started on Fluoxetine for anxiety and depression. I’m feeling nausous, dizzy and generally lethargic since starting this although not sure if the chemo is still affecting me although nearly 3 weeks post chemo. I just wondered if anyone had any experiences with this medication and how they felt taking it.

Julie

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