[MicheleParticipant]

I've definitely been told NOT to have the chickenpox/shingles vaccine as it's a live virus.

I did have a letter a year after my SCT listing "childhood" vaccines that needed to be redone, but have only opted for the flu and pneumonia ones to be done in the autumn.

🙂

[MicheleParticipant]

I was put on Clexane injections to start with but seemed to have an allergic reaction to them, so after just one cycle was given aspirin to take every day instead.
It obviously did the trick. No clots at all during treatment fortunately.

[MicheleParticipant]

Fortunately, right from the start I have been able to discuss anything with my husband about my MM.
We've come through the initial numbing shock, brain scrambling irrational thinking, treatment, SCT, recovery and now drug-free happy remission.

I can honestly say that I've only had one or two wobbly moments in the early days when I thought my MM diagnosis was an instant death sentence, but soon got over that when I came to my senses and realised I had plenty of future ahead of me (if not as much as I thought).

It's important to keep up with treatments in the pipeline. I find it a great comfort to know that there are so many doctors and scientists devoting their lives to finding a cure for MM.

My husband was a brilliant carer when I needed cheering up. His upbeat, positive attitude and humour kept me laughing through tough times.

I hope you do come to terms with Stewarts diagnosis and that you both enjoy all the good days ahead of you.
🙂

[MicheleParticipant]

Very interesting Tom.

Only a matter of time before the big breakthrough.

[MicheleParticipant]

Hi Dawn

I'm so pleased that you and I have the same attitude and thoughts when it comes to diet and cancer.

No matter what anybody says, I've always thought that diet is a very important part of supporting the immune system and consequently the whole body. Any help I can give my immune system to fight the MM can only be a good thing.
The only question is; what to eat?

Well, my husband's done a lot of research and I've also taken advice from my specialist on the subject.

Generally speaking, my specialist has suggested a good balanced diet, but did mention one thing that has definitely benefited some of her patients and that is blueberries. She had a patient with leukaemia who was given 2 months to live. He put himself on a diet high in blueberries and blueberry juice as a last resort. The results 2 years on spoke for themselves. He's still alive and kicking.

Something I've been eating more of this year after reading about its affect on cancer cells is rhubarb. I have no doubt in my mind that it's helped with my bone pain. 3 months ago I was having a lot of trouble with my left arm and it hurt to lift it. After eating rhubarb regularly through the summer, I now have full mobility back and no pain at all.
Rhubarb is very high in calcium and is also acidic which means that the calcium is readily absorbed into the body to be used for bone building.

I also eat plenty of nuts, dried fruit, turmeric, and the usual suspects!

Yes, there are lots of quack ideas out there but I do think that approached in a sensible way, what we eat does have an impact on how our bodies respond to illness.

Better to go into war with plenty of weapons rather than a defeatist, attitude.

🙂

[MicheleParticipant]

Hi Tom

I felt queasy for a few weeks after my SCT and just to be on the safe side always had a sturdy plastic bag with me if I went out anywhere.
Just as well I did, after 6 weeks I suddenly felt sick when I was at a stately home. Fortunately I managed to get back to our car before my trusty plastic bag came in very useful!!!
After that day I was fine. 🙂

[MicheleParticipant]

A perfectly normal side-effect of CTD I'm afraid.
At times it looked as though I suffered from Parkinson's disease and I couldn't even do any knitting.

The only crumb of comfort I can offer you is that it's only temporary and stops almost immediately after treatment.

😐

[MicheleParticipant]

Well done for getting through that Tom.
Yes, I can remember the harvesting process. I did my own gcsf injections too and like you had some amazing bone pain on the day the dear little stem cells all got chucked out of my bone marrow into the bloodstream.

I got enough bagged up for 2 SCT's in just one session, so thought it was all worthwhile in the end. Fortunately, I didn't get a temperature spike though.

It seems to be a case of "no pain, no gain"!

Having the actual SCT is a doddle compared to everything that's already happened!

Keep us informed…… 🙂

[MicheleParticipant]

Great news Tom. No treatment is still classed as treatment, so your post must belong here!

That's the sort of hospital visit I like too. I'm hoping to follow in your footsteps.
16 months on from my SCT, I'm totally drug-free and when I saw my specialist in April, because my bloods and health were so good, he suggested a telephone appointment instead of seeing him next time. (But obviously I can still contact him anytime). I readily agreed to that and gave me a lot of confidence as you can imagine.

I hope reading this post will give newly diagnosed people encouragement and that they'll realise that living with MM definitely isn't all gloomy.
🙂

[MicheleParticipant]

I personally would never take out any sort of insurance like this. Most of them are a con and don't pay back anything like you paid in.

You're better off putting that £10 into your own savings account each month!

[MicheleParticipant]

Hi Tony

No, it's not the same one. I was sent the one in the post too.
This one focuses in on SCT and seems to ask very good questions.

Michele

[MicheleParticipant]

Hello Dave and Gill

I know it's a very hard decision to make at the stage you're at. When I was told that my CTD treatment had knocked my PP count down from 46 to "a trace" in 6 months, I wondered if I should delay my SCT as I couldn't see how using my first batch of stem cells up could benefit me at that point.

However, I then thought "My myeloma has just been beaten down by drugs and is on the back foot now", so I decided to go for it. I could have left it until a relapse, but by that point I thought the myeloma is gaining strength again and may be harder to deal with.

Am I glad I did? In a word, yes.

I've got to be honest, the SCT isn't pleasant but it's only for a very short period of time and once those neutrophils pick up, if you're like me, you'll be feeling great again in a couple of months.
15 months on, I haven't looked back and the horrible experience has dimmed long into the past.

All the best to you both and keep in touch on here so that we can help you along!

Michele

[MicheleParticipant]

You've asked a very interesting question there Chris.

When I was first diagnozed, my PP's were 46. After 6 rounds of CTD they dropped to below 1, or what the specialist called a "trace".
After SCT, they were still showing as a trace. 15 months later…you've guessed it, still a trace.

At first I wondered if it was worth going through the SCT for what seemed to be no difference in my PP readings.
However, on the whole I think it was better to have the SCT whilst the MM was on the back foot so to speak, rather than wait for a relapse.

I've been assured that the SCT was successful and that I'm classed as being in a "very good partial remission". (the most common category apparently).

I haven't been abroad since the SCT so haven't had to answer any vague insurance questions, but will do one day soon!

🙂

[MicheleParticipant]

A welcome form me too Karen.

I was diagnozed in May 2011 (age 49) and had a SCT in February 2012.
I was very fortunate to have been diagnozed at a very early stage before any major bone or kidney damage, so haven't had to have anything like you.
It must be awful and I really feel for you.

After SCT, it only took me about 4 months to feel normal again and 15 months on I'm leading a drug-free remission life and making the most of every day.

I too workied in a charity shop and thoroughly enjoyed getting out meeting people but it had to come to an abrupt halt in March when I caught a very bad dose of flu'. I then realised that my weekly Tuesday mornings weren't worth risking my health for. Sadly customers and some staff seem to think that walking in and coughing and sneezing all around you is acceptable.

I haven't got any children but have a wonderful husband who is always there for me.

Take care and keep posting.
Michele x

[MicheleParticipant]

Hi Skyblue

I find your post interesting because I'm convinced Myeloma and other related bloodcancers are genetic.
I was diagnozed with Myeloma in 2011, my father had Non-Hodgkins Lymphoma and my grandfather (dad's father) had leukaemia.

I also know other families with similar patterns.

Whenever I mention it being hereditary, it seems to fall on deaf ears though.

Best wishes to your grandma.

[Author]

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