[alpenatorParticipant]

I am just finishing cycle 3 of CTDa and am having very mixed days of ups and downs. Worst is the 'brain fog' that descends every few days when my head seems disconnected from my body; leg pains are quite bad some days particularly around a replacement knee. I also have badly blurred vision. I will be 78 when I end cycle 6, which is obviously relevant on a number of counts.

It occurs to me that we 'sufferers' are fighting two battles; as MM has no physical manifestation we tend to forget that this is the primary battle. The secondary battle, the one we fight every day, is with the treatment (chemo) and this takes over our life.

My aim is to reach the end of cycle 6, but what then? It gets a bit scary to think of that day I must admit. Where do I go then?

I would be interested to hear other people's thoughts and experiences of this journey.

[PeterJamesParticipant]

Hi Anthony
I started my 6 cycles of CTD last year at 70
I said from the word go I wanted an SCT @ the Manchester Christie
70 seems to be the upper age limit for an SCT, not sure if this varies for NHS or Private treatment
I was tested , the important bits judged in good working order , fairly fit & active , still working part time & very positive
I think they take all this into consideration
Although I have a spare lot of cells on ice , I'm not sure if they would use them in 7 or 8 years
After my SCT my pp was down from 42 to 3 , which put me in good partial remission
Had I not had tHe SCT I think I would have just had the three monthly checkups
The SCT did finally get the pp to disappear , hopefully for a long time
You do not say if the chemo is dropping your pp
You certainly have up & down days , very down after dropping off the four days of steroids
My vision was blurred , otherwise I had few if any probs with the CDT, but everyone is different
After all this time my lowered immune system last Han has got me a dose of shingles this last few days, not pleasant as I have to sit on them !
All the best
Peter

[eveParticipant]

Hi Anthony

The third cycle is when CDT hits home,with any side effects,this does get better before the 6 cycle.
If you are not on trials or not offered any maintenance. Trials,then that is the end of the treatment,but they will keep looking at your bloods,depends on the consultant how often,it will eventually pan out to every 3 months .

You do not say if you are on a bone strengthen drug EG. Zometa,which is a monthly infusion!!!!,this would be the normal way of keeping a general eye on you,in clinic any small problems,picked up by nurse,if necessary see a doctor,then every 3 months see a consultant.

At home you still have to be sensible ,watch out for infections and keep away from people with germs,your immune system takes a long time to build up,and being that little bit older will be a bit slower,this is we're listening to your body comes into play,having a high temp still apply,s.ring unit.

You might think,what next!!! But make the most of not going to hospital,Slim and I sat down and worked out that in 2 1/2 years,the biggest break from not attending the hospital was 6 weeks,and that was only because we went to NZ when he had his short remission. Eve

[alpenatorParticipant]

Thanks for your reply. I am on zometa, which I feel is doing a lot of good so far. Consultant increased my pain relief which has really helped the leg pains making it easier to get about.
Blurred vision being looked at by Eye Clinic next month. Brain fog continues to be the most uncomfortable side effect.
Last dose of Dex tomorrow in this cycle, waiting to see if I get the usual downer

[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

[alpenatorParticipant]

Finished last dose of steroids in cycle 4 last Friday with worst side effects ever. Saturday spent all day asleep in bed, Sunday not quite as bad but blurred vision was awful as it was on Monday.
Almost back to 'normal' today (Tuesday)
Also lost 8lb in weight over the 3 bad days.
Consultant next Monday to start cycle 5, the end is in sight!!

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