[mervyn53Participant]

Dear newbbies

I was diagnosed with MM in November 2016 so coming up to my eitgth anniversary. I was always very fit (half marathon 1:2) never smoked in my life, not a heavy drinker. Nevertheless, I collapsed with three fractured vertebrae when the GP was advising rest and ibuprofen.

Since then I have all the cocktails the NHS can throw at me and I am not on unlicensed Venetoclax. I have had two stem cells transplants and one radiotherapy session. Alklpretty grim, but you get over then and can be grateful for the extra time allocated to you. Some cancer patients have only three months.

I just do as my doctors tell me and have lived an extra 8 years. I do have problems – diarrhoeia, neuropathy in feet, sleepless nights when on dexis but all easy to bear in the circumstances. Do you want a pilot who has trained and studied all his life or to believe Google and gossip ?

Good luck and hope this helps.

Mervyn

[mervyn53Participant]

Dear David and Rebecca

Thank you for these postings. I have read Rebecca’s helpful and perceptive postings over the last few years and found them very helpful.

I don’t assume anything about remission periods, except that overall there must be the law of diminishing returns. otherwise, doctors would do them again and again.

In my case I currently feel fine, but my paraproteins have gone from undetectable to 6 and then 16 so still very low but the doctors are already on my case and I am signed up for the nationwide clinical trial. I think it gives me the best chance. We shall see.

Live long and prosper !

Mervyn

[mervyn53Participant]

Hi Jan

I read this post with interest. I had my first SCT a few months ago and am not feeling too bad apart from the hair loss.

What makes you say that ‘as I rapidly approach my first relapse’ ?  Your paraproteins have gone up ?

I ask so that I can watch out for whatever you say the warning sugns are.

all the best

Mervyn

[mervyn53Participant]

Dear Stanley

I am in a similar position to you; diagnosed about a year ago and immobile with 3 crushed vertebrae. After 6 cycles of velcade, now two months after SCT and more or less OK.

For those of us that like(d) going to work, there is a great void, as you say.  This has to be filled and the more time wasted moping about  the house wondering how to do that, the more time is wasted.

Most people will sooner or later find what they want to do – even if it is going back to work, starting another business, playing golf, doing up a house, betting on horses or looking after grandchildren. At our stage in life we have more freedom to decide. The younger ones generally don’t.

Enjoy !

Mervyn

 

[mervyn53Participant]

Hi

I had a lot of sleepless hours when I was on velcade, dexis etc. The thing that worked for me was a tea called ‘Snore and Peace’ made by the Clipper company.

Try it. Nothing to lose.

Good luck

Mervyn

[mervyn53Participant]

Dear Graeme

I was taken into Addenbrookes in Cambridge in late Novemeber with 3 crushed vertebrae and paraproteins at 74. After 6 cycles of Velcade and dexis and cyclophosphamide paraproteins were down to 5, but Dr. Crawley advised SCT.

I had the SCT on 16 July and they let me out 16 days later. Yes, I felt rough while I was there and I had thought of putting SCT off until pps started to go up again, but Dr. Crawley advised to do it because they wanted to hit it hard. He knows more about it than me !

I have lost my hair and I am still working to get my strength back  but 40 days after SCT I went to clinic and was told my MM is now ‘undetectable’.

I am 65.  You decide !

Best wishes

Mervyn

 

[mervyn53Participant]

Hello Natalie

I wish your mum well. SCT will not be easy for her. Please read the article I recommended. You will find it helpful.

best wishes.

Mervyn

[mervyn53Participant]

Dear All

I am happy to report that I have been allowed out after 14 days after the SCT. Still very tired indeed.

I should report to anyone interested that I stopped writing my diary because (a) I was very tired and weak (b) I didn’t think a short daily grouse was contributing anything and (c) I stumbled upon an account that seemed to me to mirror my own experience and it was very well written.

For those interested in following what SCT does before during and after I can warmly recommend that you type into Google: My experience Undergoing Stem Cell Treatment.

It tells you most of what you want to know in a factual way by someone who’s don’t it.

 

[mervyn53Participant]

Dear Jan

thank you for this. I am not so sure I am doing well. Did not write yesterday because I felt so terrible and had no energy. For now day 7 the stomach cramps have gone and feel better but we will see how long it lasts.

mervyn

[mervyn53Participant]

Day 5 SCT

started the day with more energy and thought that this is getting better but by lunchtime I was back to feeling weak and rough. Tried to eat some lunch but couldn’t face it.

maybe tomorrow.

mervyn

[mervyn53Participant]

Day 4 SCT

thanks for the advice and support. Day 4 nothing much has changed. Feel very rough and weak. Slept most of the day. Still not eating. I survive on banana scandishakes provided by the hospital. My neutrophils are still 1.8 so maybe the worst is still to come.

mervyn

[mervyn53Participant]

Hi helen

Now on day 3 and feeling rough and very weak. Don’t want to eat anything. The thing to remember is that they give you the melphalan on day 1 then the stem cells on day 2 with 18 hour drip. On day 3 they leave you alone. It is in your body so the fight can commence. The doctor says it will be like this for 4-5 days.

Couldn’t write yesterday because of poor connectivity.

 

Mervyn

 

[mervyn53Participant]

Day 1 SCT

A long day if you wake up early as I do. There were the usual bloods and so on, but then you have to wait for results, the doctor to call in and the chemo from the pharmacy. We got started about 1400 hours with about an hours worth of liquid being pumped in so as to pump out quickly.

Then we had the chemo and an hour of sucking ice cubes. I feared it would be longer. I saw someone had to suck for 6 hours ! That would be an ordeal.

After the chemo I am on 3 bags of drips at 6 hours a bag so an overnighter and 18 hours in all. Stem cells start tomorrow. Hasta manana.

Mervyn

 

 

[mervyn53Participant]

OK. Thanks for this. Will write it up daily, if I can.

M

 

[mervyn53Participant]

Dear All

 

Many thanks for these words of advice. I will see how I feel when I get in there.

Hope all goes well for you guys.

Mervyn

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