[digredsParticipant]

Hi Everyone,

I’m Lorraine, I turned 50 last November, and was diagnosed with MM in January. I have been sneakily reading the posts on this forum since my diagnosis and found them really helpful but its only now that I feel together enough to actually come out of the shadows!

My treatment started in February – Velcade/Thalidomide/Dex but has now been stopped because my liver function seems to be affected. Has anyone else experienced this? If so, what alternative treatment was offered? Its a shame because I felt I was handling the velcade really well – no side effects at all…apart from damaging my liver of course! 😉

For all you clever  people..my latest results show my Alk Phos is 294 and my ALT is 135

GGT is 65

Any advice welcomes..and hello to you all.

[tonyfParticipant]

Hi Lorraine, sorry that you have had to join us. There is a wealth of knowledge on this forum. Im now 71, was diagnosed 4 years ago, was on the Myeloma X1 trial, had a stem cell transplant, was off all drugs for just over 2 years when I relapsed. the first treatment I had was velcade, thalid, and dex. The thalidomide really laid me very low and was changed for cyclophosphamide, all the doses were very low and only once a week, it worked because my paraprotien came down and I am now ready for a second stem cell transplant.
Sorry have no idea what those readings of yours mean.
Im sure that your consultant will come up with future treatment, there seems to be so much available.
You could always talk it through with the Myeloma UK nurse over the phone, they are very good and understanding.
Best of luck.
Tony F

[dickbParticipant]

Hi there,

Sorry to hear about your Liver problem and I had something very similar when I first started with Chemo. I had PAD which caused a very high increase in Liver enzymes, so much so the Medics stopped the Chemo for a couple of months hoping the enzymes would drop. They did eventually but it was a tough call whether to continue Chemo or wait longer. Now, Revlimid is known to have side effects on the Liver and it’s derived from Thalidomide so I wonder whether it’s the Thal that’s causing your problems. The Velcade will cause various levels of Neuropathy, like everything else to do with MM it’s different for everyone. After the Liver problems they put me on VCD – Velcade/Cyc/Dexy, I haven’t had anymore Liver problems since and have since my SCT relapsed. So I’ve been on Revlimid and Dexy initially to reduce my IgG and now as a maintenance treatment. So far so good but unfortunately Rev will stop working one day.

Anyway, the best thing is as Tony say’s contact the Myeloma nurses if you need advice, I’ve always found them really helpful.

[digredsParticipant]

Tony and Richard – many thanks for your responses and insights. My results seem to have improved so I will try Velcade again with twice weekly bloods to keep a close eye on my liver. Fingers crossed!

[sarowjenParticipant]

Hi Lorraine ,I was also diagnosed in January and I’m just on the last week of my first cycle of VCD . So far I’ve been lucky as the only side effects seem to be extreme tiredness after a weekend of struggling to sleep on the steroids ! Oh and a weird obsession with marmite lol .I hope when you return to the treatment you liver stays stable so you can continue with it . I don’t know what your readings mean either ,I just know my paraprotein level was 33 when I Started treatment .My bloods have remained good throughout and my haemaglobin levels have gone up slightly as I was a little anaemic .Keep us posted as to how you’re getting on ? I’m 57 by the way xxx

[digredsParticipant]

Hello Sarowjen..or should I call you ‘Marmite Girl’?

My taste buds have changed since I started treatment..I was always a ‘savoury’ snacker but now its sugar all the way. I have been living by the old ‘a little of what you fancy does you good’ adage but I think its time now to get a grip! 🙂

Had bloods done again this morning and the results had further improved so I was able to have velcade again this afternoon. I hope you take this the right way, but it is nice to find someone at the same stage as I am. Hopefully we can help each other out as our journey progresses. xx

Richard – are you, like Tony, going to have a second SCT?

Hoping everyone has a good day tomorrow

Lorraine

 

[dickbParticipant]

Hi Lorraine,

Well, for a 2nd SCT I think for me it will be done after all other options have been exhausetd. As I said the first one didn’t really working in thjat it reduced my IgG from 36 down to 24. I think the other problem is that whgen they harvest the stemcells, they cannot guarentee they have removed all the affected paraprotein cells so naturally if you have a high number than there is a chance that a high number will be returned into the blood. So if I do go for a second than I would want a new Stemcell harvest.

Talking about change in taste buds, I use to dislike Blue cheese, now I have to have it nearly everyday, post SCT Cinnammon gives me Diarrhea, my wife thinks that’s because we were using a cheap form of Cinnamon, not the pukka stuff. I’m not so sure.

The worsdt thing about eating was the constant metallic taste in the mouth, I didnn’t touch coffee for 6 months.

Richard

[digredsParticipant]

Hi Richard – so much to consider, so much to learn – certainly about SCT. I’m only just getting  my head around what MM is, and how my current treatment affects me so not really given too much thought to the transplant element. Need to up my game I think.

Blue cheese….yum. I’m not allowed it at the moment so am quite jealous that you can have it every day. Enjoy your lunch tomorrow! 🙂

 

[Author]

Posts