Now on my fifth cycle and looking back in my diary I see more good day's than bad, which is quite good. Had a "top up" recently and that made me feel much better and I can now stride out when walking, although I do get breathless very easily.
But I feel that things are improving although slowly.
I am on a 28 day cycle with Chemo once a week Thalidomide daily and Steroids days 1 to 4 at the beginning of the cycle.
It would be nice to read of others who may be on a similar regime to compere notes.
In the beginning I found anything physical just too much but I am pleased to say that now I spend a lot of time cleaning up the garden (with rests) and erecting fencing. weather permitting of course. and it is such a good feeling rather than sitting in a chair most of the day. Stairs are still a problem, no idea where my muscles went!
Having read the Blogs and although we all have the same Cancer type there seems to be quite a difference in treatment so it is hard to make a comparison, which is the one thing I would love to do, but that is not going to happen.
So anyone out there with similar problems let me hear from you.
FormerMember
Hello Eddie,
Its good to hear you are seeing some light at the end of the tunnel. Afraid I can't be of any help with comparisons for you, but just wanted to say "Hi" and that I am so pleased you are feeling a bit better during your fight.
You are quite right on the treatment regimens. Myeloma treatment currently is evolving daily and a good thing. 3-5 years ago it was dismal outcome for all Myeloma patients. Now it is much more hopeful. But it is still an "orphan" disease only 1% of all cancers and 14% of blood cancers. Our first consultation for a Stem Cell Transplant was so dismal that I was determined we would not go back to that doctor and drove 2,200 miles to LIttle Rock Arkansas (we live in the USA) to the Myeloma Institute there and we are getting cutting edge treatment here, thank god. But even here, each patient is quite different, as they have isolated different forms of Myeloma and so treat you differently depending on high risk, low risk, and many other factors. I put up a forum on Myeloma 101 and then also on my profile page are some good websites in the US on Myeloma that are working to keep the research going strong.
Energy level for my husband has been totally the most difficult for him now that the pain is managed. We are currently in Little Rock receiving treatment for stem cell transplant, so he is quite exhausted from all of that.
i too am on my 5th cycle of CTD treatment. and as you say, have found many good days in the past few weeks, and of course there were days when all i wanted to do was sleep and rest.
on the whole i can see very many positives, i can walk a fgreater distance with rests and and at least get to the village and back. a distance of 800yds each way. with a break for shopping when we get there. i get plonked on a seat my wife does the shopping.
My stairs are still a pain to me too. the point around my knees seem to be the worst form me. its a good job the bed is at the top of the climb because some nights i seem so tired when i fanally reach the top.
anyway good luck with the treatment i hope its all worth while for you. my consultant is talking about stem cell harvesting and transplant as the next stage for me some time in the new year. keep in touch we seem to be so close in our treatment stages. it would be good to compare notes
