[CarolsymonsParticipant]

Hi Illona I also hd a spontaneous fracture of my collar bone this year; Easter Sunday as I got put of the bath! But…..after radiotherapy I have full use of my arm, am near to completing 18 weeks of CDT drugs (cyclophosphamide, dexamethasone and thalidomide) that appear to have decimated my cancer markers(paraprotein, immunoglobin a and lambda light chains) so stem cell transplant is looming.

The side effects of the drugs vary from day to day depending on what is on the menu, but are manageable, especially if you check the blood test results and see they are working. The best thing the consultant said to me was "If you have to get cancer this is a better one as it is manageable." Yes it is incurable, but with overall survival rates increasing all the time, I now choose to view myeloma as a chronic disease, like diabetes. Maybe I will be proven wrong as it is early days yet, but talking to your dad in terms of a chronic and manageable disease,rather than a death sentence may lift his spirits. By the way I am 64 years old next month.

Carol

[CarolsymonsParticipant]

Thanks everyone I so needed reassurance…I just hate these drugs even though I know I am fortunate to have such good results, but then my numbers did start off very low (iga 18 lambda 549). I spoke to the nurse again yesterday who phoned the consultant and yes it is those darn lambda light chains and the abnormal ratio which makes sense now of course.

I have procrastinated for 2 days as I have my usual temp spike and annoying cough when I breathe (I get this twice every cycle with steroid withdrawal) but neutrophils are still over 3, so hoping I get rid of this today. I promise I will dutifully but reluctantly swallow the 40 tablets scheduled for day 1 tomorrow and visualise the drugs killing those remaining lambda light chains……well that's the plan!

Carol

[CarolsymonsParticipant]

I am in London -diagnosed mid April this year and the treatment via Ealing Hospital with the NHS has been amazing! I don't think there would be any delay in treatment if you decide to return to the UK. What drugs are they giving your husband?

Carol

[CarolsymonsParticipant]

Welcome -you are just ahead of me as I was diagnosed mid April this year and am up to week 13 of CDT after radiotherapy to a plastycytoma on my collar bone…pretty weird hey? Am also planning /hoping for SCT so will be following your posts as you go through it. I have also been off work since my collar bone disintegrated on Easter Sunday. Believe it or not before that I truly believed I was the healthiest and fittest 63 year old in West London! Bit of a shock was this cancer diagnosis to say the least! But with the side effects from these toxic drugs, as I have posted elsewhere I have gone from healthy to hell in a few short months. But we all have to do whatever it takes to survive, so let's fight on together and WIN this battle against the cancer gremlins trying to eat us alive!

Carol

[CarolsymonsParticipant]

I am also holding off on the curcumin till chemo is finished.
Carol

[CarolsymonsParticipant]

Curcumin is supposed to interfere with the drug cyclophosphamide

Carol

[CarolsymonsParticipant]

Hi Anthony
I am just starting cycle 5 of CDT and also have blurred vision…worse on chemo day and day after..hope it is not permanent! Because I had a very low pulse rate and intense pain (normally I am pain free) on steroid withdrawal, I have been given a tapering dose of steroids which has made a huge difference. So after the 4 days of the 20 steroids, I have 10, 5 then 2 steroids over the next 3 days. Might be worth asking your doc about it?
As I am 63 I am planning to move straight to SCT as soon as possible…not sure if it is the right decision, but I do want to be drug free. Before this cancer i didn't even take paracetamol! These drugs are making me sooooooo ill. I HATE them.

Carol

[CarolsymonsParticipant]

At Ealing they organised for me to talk to a 10 year survivor who was awaiting his second transplant and just returned from his annual cycling trip through Spain with his old mates…he was over 65 and yes as fit as a fiddle. Also another woman 11 years on who had had 3 transplants I think, but wasn't in great shape the day I met her….had some infusion that day not sure what. So there is hope for us beginners on this journey. Have to look for the silver linings somewhere I guess.

Carol

[CarolsymonsParticipant]

Great idea!

[CarolsymonsParticipant]

I have a red face and hot flushes on dex…also had terrible aches and pain on withdrawal and tachycardia when my pulse rate was very low. Now I have been given a tapering dose of dex having 10 then 5 then 2 in the 3 days following the high dose dex. and that has solved both pain and pulse symptoms. Of course it means another 17 dex pills twice each cycle of CDT but it is better than fainting from low pulse rate I guess!

Carol

[CarolsymonsParticipant]

I wonder why I am being given parmidronate over 4 hours (bisphosphonates) at Ealing Hospital when most other people are having zometa? Anyone know? Parmidronate takes 4 hours to infuse as well and I also had flu like symptoms but only after the first one.

Carol

[CarolsymonsParticipant]

Be brave Gill, Stephen will still be with you.

Carol

[CarolsymonsParticipant]

But is Daz's diagnosis actually myeloma with these added complications? It does seem tht the treatment for Castleman's is similar to myeloma with chemotherapy, steroids and thalidomide according to the Internet.

Carol

[CarolsymonsParticipant]

Thanks Dai what you say makes sense to me now…I have just completed 3 cycles of CDT and plan to have a transplant. Wow you had a fantastic response with your light chains didn't you? Let's hope mine keep moving downwards now they have started to move. I have been reading about minimal residual disease, which is the optimum for transplant and as well as less than 5% cells in BMB you need a normal heavy light chain ratio. Right now my ratio is 0.02 and it needs to be higher than 2! As my lambda numbers drop though, this will continue to improve, so once again it is fingers crossed, keep swallowing the pills and STAY PATIENT! (message to self)

Carol

[CarolsymonsParticipant]

Thanks Peter I think at my age and also with my desire to return to Australia to reunite with family and friends I should just bite the bullet and do it…..but that mephalan scares me……

Also do you lose your hair with the cyclophosphamide for stem cell extraction? The thought of being bald freaks me out for some reason…and I am not a vain person. I think that it will just force me to face the fact hat I have cancer which in some ways I am still trying to deny.

Carol

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