[alpenatorParticipant]

There have been lots of responses to your original post; but I will add my bit if I may.
On my first chemo regime, after diagnosis, I was on CTDa but had to come off it after 41/2 months as I was so ill that I waas spending most days in bed and feeling like death.
My consultant said that there was no poine continuing if the treatmen was worse than the disease and my pp had dropped to 6 (I think.)
The MM relapsed after 8 months with pp at 39 and I was put on Velcade and Dex, 4 weeks on and 1 week off; the Dex was 10 tabs @ 2mg on days 1 and 2 of each cycle.
On the first cycle I had dexhead most days and my PN got much worse.
I have just finished the 2nd cycle and in the past week I have put on 1 stone (never put weight on before,) my sleep pattern is shot to pieces (although last night I managed a 6 hour sleep without interruption,) my PN has worsened and has crept up my left leg so that it feels dead below the knee. I have also felt very depressed but declined my GPs offer of tranquilisers.
I guess that we have to continue the fight, although at almost 79 I wonder how long I will continue to say that.

[alpenatorParticipant]

For the nausea, try Gin Gin Chews from Holland and Barrett (and elsewhere) I found/find this much better than the Metoclopramide.
I am now on Velcade + Dex and still have problems with a sore mouth (rather than a bad taste)
You never can tell with these side effects, we MM sufferers must suffer more side effects than any other people.

[alpenatorParticipant]

@ Sue
I am on Velcade + Dex (dont like to abbreviate to VD!)
I must say that on this cycle (2) I have very few side effects thank goodness; bit depressed at times and the PN soesn’y get any better, but all in all not too bad.
On the plus side, I do NOT have back pain for the first time in more than 2 years, I cant tell you howe good that is 🙂

[alpenatorParticipant]

Sue
Dont worry about Velcade side effects, not nearly as bad as CDT in my experience and they seem to get less as you get into the treatment. I am midway through se3cond cycle and the main side effects remaining are the PN in my feet, and like Ian I have some loss of feeling around my knees, also I have difficulty sleeping for the 2 nights following the injection.
The subcutaneous injection is the best I think although some people have reported pain in the are. I have had none.
Carry on regardless

[alpenatorParticipant]

I am currently on my 2nd cycle of Velcade + Dex after my first relapse of MM.
I seem to be on a cycle of constipation and diarrhoea, nothing normal with this disease is there.
I take Laxido regularly for other stomach problems and find that after 2 days of constipation I need to up the doses of Laxido from 2 a day to perhaps 3 or 4 – that usually clears it but then starts the diarrhoea.
And off we go again.

[alpenatorParticipant]

My MM was diagnosed after a visit to my optician with badly blurred vision. He sent me directly to local hospital eye clinic who admitted me on the spot and 10 days later I was home with MM.
My first round of CTDa largely cleared up the vision but I recently relapsed with the first indication being blurred vision again. This is continuing in my 4th week of Velcade + Dex and varies from day to day.
Eye examination revealed pressure on the optic nerve from lesions in my skull ( I have a nasty lump on the back of me head.)
MM is a nasty beast in that it presents you with all of these unexpected pleasures that we have to fight on top of the cancer itself.

[alpenatorParticipant]

Great idea; we do feel alone at times and people who do not use this forum must feel even worse.
Having completed (almost) the intial CTDa treatment I am in my 5th month of ‘remission.’
The worst thing for me is that I often feel very depressed that I have lost the ‘me’ that I knew and will never get him back.
I feel unwell for most of the time (and zonkd out on morphine) and to know that this is not going to go away is the worst part of MM at the moment.
I have always been a very positive person, but the MM has changed that part of me. I hate it for that.
I hate also how it has affected my wife who. like all our carers, suffers with me without having any symptoms. I can’t imagine how she feels and am so sad that I have inflicted this on her. She doesn’t deserve it.
If I can help with the booklet, let me know and you can certainly use my name.

[alpenatorParticipant]

Like many others I suffer from PN in m y feet with the same feelings as others have described. I do find that bed socks help at night.
I also suffer from very cold hands which I suspect is also PN.
All not very pleasant but better than some side effects.

[alpenatorParticipant]

I have read on another MM Forum about the side effects from Zometa and it appears that patients in USA get more information and warnings about these than I did.
I have been on Zometa for 7 months now and have only received the Macmillan leaflet which seems to me to treat the dangers lightly.
I have told my dentist that I am on Zometa and will certainly not have any dental treatment without serious discussions with him and my consultant.
One thing learned elsewhere is that Zometa should be stopped 3 months before and after any extraction.

[alpenatorParticipant]

Thanks for all your responses.
I now know where I am going!
Had skeletal scan last week when I saw my consultant and have a bone biopsy in 10 days time. These to confirm the paraprotein results.
I then see consultant again in January with monthly bloodtests and infusions of Zometa in between.
I still have a lot of back pain and some leg pain but morphine patches and Oramorph help with that.
I also bought a back support (like a corset) which really helps with the back when walking – a very good buy.
At least I can pretend that I don't have MM for a while which is a good feeling.
Good luck to you all.

[alpenatorParticipant]

Cant understand this as I had no problem at all as I really did have difficulty walking when I applied (and still do.)

I'd try again and 'egg the bread' a bit when you answer the questions about walking distances.

[alpenatorParticipant]

Is there a support group at your hospital; or could you start one with help from Myeloma UK?

There is one at my hospital, Queens, Burton, but it doesnt meet very often.

[alpenatorParticipant]

Thank you that was very helpful and confirmed what I thought may be the case.

I always feel it is better to have a bit of advance knowledge before seeing the consultant, makes you sound smarter than you are!!

Hope that your Mum continues to be OK

[alpenatorParticipant]

I stopped CTDa after 4.5 months as my paraprotein had dropped to 3 and I was suffering very badly from side effects spending most days in bed.
Consulatant said that I could stop and I see him in 5 days time to arrange bone biopsy and scan to confirm remission.
It is now 10 days since I stopped and apart from tiredness and blurry vision all of the side effects have gone. Some PN remains but that is slowly getting better.
I reached the stage when I could not continue so am glad that consultant agreed.

[alpenatorParticipant]

Hi there
Just finished cycle 4 of CTDa and, like Mike, am suffering from PN in my left leg. Again the whole leg feels heavy and very tender if touched with the occasional sharp pain. It is not at all pleasant.
I alo have problems with my speech at times, and hand tremors, so much that my GP checked for Parkinsons (that was OK.)
I have been on 10mg morphine patches since starting treatment but this cycle my consultant added Oramorph, I only take 2 spoons a day but it does the trick most days.
There seems such a wide variety of side effects and treatments, gets very confusing.

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