[ivanwarwickParticipant]

Hi Karen

I have had a stem cell transplant, unfortunately my kidneys failed during transplant so I’m on dialysis. That happened in 2012. My advice would be to drink plenty of water during transplant and use corsodyl as your mouth wash they won’t supply they give a cheaper version.

I not going to lie to you it’s a tough journey but there is plenty of life after the transplant.

Ivan

[ivanwarwickParticipant]

They took me off CTD because I was getting small blood vessel clots on my right leg. Thanks Dave, Eve and Helen for your comments, it's much appreciated. I obviously have a lot to learn about this MM however I'm feeling positive at the moment and I do take much encouragement for positive results like the paraproteine count.
Ivan

[ivanwarwickParticipant]

It looks like it was the small blood vessels on the leg was getting blocked. They increased my clexane injection from 40mg to 150mg and I was told to stop all chemo medication until this leg cleared up. Well the leg did improve, the big toe is still not completely better but they have taken me off CTD and started me on Velcade. Had my first injection on Thursday and all going ok so far. I'm getting it twice a week with 10 steroids on the day of the injection and 10 the day after only.

Ivan

[ivanwarwickParticipant]

I rang the unit and the nurse told me to come on in. The Dr tested me for Sciatica and told me it was not that. She thinks it may be a trapped nerve and the big toe issue was more than likely peripheral neuropathy which can be a side affect of the Thalidomide. She has given me Pregabalin Cap to take twice daily. I can't walk any further than 30 yards before the pain starts down my right leg, it does get so painful that you have to stop. You can relax for about a minute and start again for a another few yards but eventually you will need to sit down for 5 minutes. The Dr is sending me for an MRI scan however as you all know that will take at least 2 weeks. I have had to take time off work which is something I did not want to do this early on.

[ivanwarwickParticipant]

I did ring the unit today and they told me to go see my GP. I have no evening number to ring, I will ring the myeloma.org.UK nurse tomorrow.

Thanks for all the advice.
Ivan

[ivanwarwickParticipant]

I do wish I had been drinking, thanks that's a good idea I'll ring tomorrow.
Ivan

[ivanwarwickParticipant]

Firstly I would like to thank everyone who has left me comments and advice they are all much appreciated and I have to say, Jet you page is fantastic keep it up I'll be reading it regularly.

Its 3:30 in the morning and I'm not sleeping as I'm a little angry and upset so I thought I would drop on here and view my comments cos I know you all understand. I wish things could be different and I wish I did not have to put my loved ones through all this. I feel so sorry for my partner Cathy who is my rock and she is the one person who I can really turn to when things get bad, and I feel responsible for putting her through all this pain. My kids are the best children anyone could wish for and I know that they are finding it difficult, however there is little I can do about it. I just get angry at just how many people this is touching.

Anyhow this is day 5 of the treatment and the only side effects I'm having so far from the CTD is bloated or swollen abdomen, legs and face and a slight pain in my stomach. I have just finished my first course of steroids and don?t need to take them for another month so my swelling should go down by then hopefully. I'm intending to go back to work on Monday 8th Aug. I sit in an office most of the time now so there is little physical strain however I do work at an Airport and can sometime be exposed to lots of people so maybe I need to be careful as my immune system may not be up to its normal reliable self now.

Ivan

[ivanwarwickParticipant]

Thanks for that Carol I may just take you up on that if i feel grumpy.

[ivanwarwickParticipant]

Thanks Carol

That is great information most encouraging, I'm on my third day of CDT and still not reaction to any of the tablets thank goodness although It's still early days, the only thing I'm getting is the hiccups and if that's the only side effect I'll be so glad. Did you get treatment in 2005 if so what treatment did you get?
Regards
Ivan

[ivanwarwickParticipant]

I have just started CDT today so I'm on my way. Well I have started CD and will be taking the T at bedtime. Now its a waiting game. Very informative Eliz about your experience I'm not sure how I will react to any of this however I'm optimistic. I cant believe that I have just taken that many table I normally don't let a tablet pass my lips. Boy what a change.
Thanks for all you help

[ivanwarwickParticipant]

Eliz

Thanks for that, how did your SCT go in August and how have you been since.

Ivan

[ivanwarwickParticipant]

Eve

Yes they did give me all the information about taking the tablets. I'm most impressed with the nurses and my Consultant at my hospital in Antrim N.Ireland (Laurel House), I'm luck in that's its only about 10 minutes from my house.

I'm at my caravan right now in Portrush (north coast of N.Ireland) its my retreat and I have decided to start my CDT tomorrow not today, the reason being I'm having my daughter and son down to stay and we are going to have a BBQ tonight, as I have no idea how I'm going to react to any of the tablets I though I would leave it for one more day.

Ivan

[ivanwarwickParticipant]

It was a 3 hour consultancy where we talked about everything on my list and she was so impressed by my health that she asked if I wanted to start treatment right away as I was in good condition to fight it. So guess what I'm about to start treatment in a couple of hours for now. I have all the tablets and injections to start my chemotherapy in one big bag. Its a simple process I take 10 cyclophosphamide chemo tablets at once along with a 4 day course of steroids and a thalidomide tablet. I was surprised about the thalidomide, I thought it was dangerous to unborn babies, I know it once was given as a drug for morning sickness and had disastrous results. You are probably all used to this drug but I was surprised. The chemo drug is only 10 mild tablets today and then another 10 in a weeks time and another 10 in another week etc. I go back in 4 weeks for tests to see how things are going. If all goes well I will continue for 6 months on this chemo and then intend to do a steam-cell harvest and transplant. I also have to inject myself with a small needle into the stomach to prevent blood clots. Its 5.50 in the morning Cathy and I have been up a while reading all about these drugs before I actually start. I am so nervous but I want to thank Mavis, Scott, Elizellen, Helen, Eve, Min, Brocho and Badger you have made this a lot easier for me.
Ivan

[ivanwarwickParticipant]

Thanks for all your reply?s its much appreciated, it?s good to know that I?m not alone. I?m going to the doctors tomorrow with the list of questions and my partner Cathy is coming with me, I think 4 ears are better than 2 in this instance. Like you Helen I?m thinking they may have the wrong name on the test tubes. I went into hospital for tests about a week ago and they did the bone marrow biopsy which is where they were able to give me the diagnoses. I came out of the hospital with three tablets Furosemide for the liquid dispersion, Simvastatin for the cloistral and Ramipril they told me was to reduce the production of protein, however the advice slip within only talks about reducing blood pressure and heart issues etc.
Helen you said that you have been better now than you have done for about 5 years. Does that mean you were actually slowly going downhill these past 5 years and the treatment has given you back your energy levels?
I thank you all so much for the welcome
Regards
Ivan

[Author]

Posts