[christaylorParticipant]

Hello everybody, my name is Chris & I am 61, married with 2 grandsons. My story begins early this year with painful ribs to which the GPs were prescribing pain killers. Eventually my lower back and both legs started to give me a lot of pain to the point I was struggling to walk. I hobbled into Dartford A&E on the 29th May a quick X-ray suggested something serious was going on. I was told not to stand or walk, and I was admitted to the ward. After all the tests that are are now familiar with MM mid June I was diagnosed with Non Secretory MM. I started CDT chemo therapy by the end of June but after nearly 3 cycles had to stop due to an infection. However I Have started CDT therapy again hopefully can continue in order to carry out stem cell transplant. Had some unpleasant side effects but learning all the time so coping okay. Thanks for taking the time for reading my story so far, will give further updates as time goes by. Good luck to everyone who are is our situation, stay strong and live long. CT. 

 

• This topic was modified 10 years, 1 month ago by  christaylor.

[mhnevillParticipant]

Hi Chris

Sorry you have had to join us. Like so many of us your MM was picked up because of bone pain/damage. The weeks on chemo pass, but continue to watch out for infections. If your temperature is over 38 degrees do contact the hospital.

Do keep popping in and ask any questions. There is always someone who can help.

All best wishes.

Mavis

[christaylorParticipant]

Hi Mavis,  thank you for writing on my first posting,  I have been learning quite a lot from everyone’s comments and replies. Hopefully soon I will change the photo from a flower to one of me at least your see who I am. Once again thanks.

Take Care,

Chris.

[rebeccaRParticipant]

Hi Chris – sorry to have to say welcome but as I am sure you have gathered there is still life after MM. I didn’t have CDT but know its quite a harsh routine so SCT may not seem quite as bad for you, hopefully, and as Winston Churchill said “if you’re going through hell – keep going”. Had My SCT last Xmas (Literally – and never got any presents waiting for my return home either?! Would just like to say SCT is miserable but then so is chemo but I’ve been now 10 months without chemo and it’s great so just for that SCT was well worth it – that’s your focus a good QOL drug free. Unfortunately, you never really put it all behind you but you do learn to live with it all and appreciate things much more so I guess SCT is kind of the “end” of round 1 and you can have a much needed/fought for rest from it all. It’s all doable, just make sure you’re kind to yourself and treat yourself when you are well. Best wishes

Rebecca

[tonyfParticipant]

Hi Chris, sorry that you are here, but it’s the best place to be for encouragement and info, was 67 + when diagnosed, had no bone or kidney problems, went onto the myeloma XI trial, followed by a stem cell transplant. That was 22 moths ago, I am now completely drug free, have no treatment other than a three monthly infusion.
We live life to the full, go on holidays and do as much as we can, but as Rebecca said its still somewhere at the back of your mind. I guess the trick is to keep it at the back of the mind and keep going. you have a journey of mixed emotions coming your way but it’s all doable, just stay strong and positive.
Good luck and keep us up to date with how it’s going for you.
Regards
Tony F

[christaylorParticipant]

Hi Rebecca & Tony,  just like to say thank you for your encouragement and knowledge about MM and the treatment. As you will both know it’s pretty tough at the moment and dare I say scary but reading everyone’s stories gives me strength knowing Iam not alone in this situation. My lovely wife has been a tremendous help in both looking after me and being so positive especially when I am feeling down.

Best Wishes,

Chris.

[stanley-1960Participant]

Hi Chris,

Sorry you find yourself here. I was diagnosed earlier this year and completed 4 cycles of CTD followed by STC in August. Unlike yourself i found CTD not too bad apart from the usual issues a few days of hiccups a bit of pain when taking the cyc and the ramblings on the dex. Oh ! And the bowel movement (or lack of it) . I never lost my sense of taste even through the SCT process. I do hope CTD this time around is problem free and you move on to SCT. I have had great encouragement on this site especially from Rebecca. The treatment is doable even SCT which was bit tougher for me but i now find myself through round 1 as Rebecca says. My very best wishes for the future.

Stanley

 

[john_mouldingyahoo-comParticipant]

Hi Chris,

thanks for posting. I’m a newbie and its good to see someone else at a comparative stage.

I’m 60 and my story’s pretty much the same. Ribs going, vertebrate breaking and initially thinking osteoparosis.  On second cycle of CDT at the moment, due a blood infusion tomorrow.

Nice to see that someone else posting got the hiccups. That was the worst for me as my chest was sore to begin with.

Not heard of the stem cell bit. It would be nice if these infusions get me walking well .

A  problem I have is the emotional side. I keep wanting to cry. My Dr has arranged a bit of counselling for me.

Best wishes

John

[mhnevillParticipant]

Hi John

As I would say to Chris, do read everything on the Web site about MM. Knowledge is power if your Consultant starts to talk options with you. Also, it helps to know what questions to ask.

By the way, MUK issues a free Myeloma Diary to plot your MM journey. I found it very useful when I was starting out. You could no doubt ring for one.

All best wishes.

Mavis

[christaylorParticipant]

Hi John,  Good luck with the treatment I hope that the infusion indeed helps with walking, my legs are really painful at the moment not sure if it’s the CDT or what. Thinking about buying a mobility scooter just to get down the shops and around. Crying I do a lot of that, not too ashamed to say, for all sorts of things. I think the Dex sometimes causes emotional swings. Are you having bone strengthening infusion ?.  The hiccups any remedy welcome, after about 7 hours it was becoming intollerable my wife got me a glass of water with lots of ice with a straw, that and 1 anti sickness pill did the trick. We can swap notes on how the CDT is working like you say we are about the same  comparative stage me on my second cycle since restarting.

kind regards, Chris.

[christaylorParticipant]

Hello Stanley , Many thanks for your message, I really appreciate the encouragement from everyone and the tell tale signs of the side effects. A nice cup of Horlicks just before I take the Thalidomide tablets seem to help, well what I mean is that’s my little treat with a biscuit then it’s sleep time ha ha. I don’t have any blood test results lately so not sure how much kappa light chain is coming down, due to see my Consultant next month hopefully will find out something before then.

all the best,

Chris.

[john_mouldingyahoo-comParticipant]

Hi Chris,
As far as the hiccups is concerned I was told to take the Metoclopramide tablets I have for sickness and nausea. These really helped if you have them too.

The in fusions as ,I understand it, are to strengthen the bone. (1.30pm today).

Let you know how I get on.
John

[mhnevillParticipant]

Hi Chris

I would really recommend a scooter. For me they have made the difference to always having to sit in the car while my husband took the grandchildren, or the dog, places, and being able to join in.

My first scooter is a Pride go go elite plus and it folds down into the car. (Approx £550.) I have also taken it to Luxembourg, by plane, whe I visit my daughter. I now have a second scooter a Quingo Flyte. This goes into the car, up a ramp, by remote control. It was not cheap. (£4000) but it is a more robust scooter and does quite steep terrains.

If I was starting again I’d get one of those racing TGA ones that look like a quad bike, but you need a car that would take it.

I know lots of folk resist using aids of any kind. Me, I think anything that can give me a more fulfilled life is worth it.

All best wishes to you.

Mavis

[john_mouldingyahoo-comParticipant]

Back from infusion of Zoledronic acid. Painless really, just sat in a chair while saline and the zoledronic dripped in. Took more time than necessary today because i should have bloods done before hand. Am told will only take an hour next month.

The infusion should help to fill in the holes in the bone so reducing the risk of breakage. Staff really nice, cups of tea and coffee while infusing. Cakes as well but as I have Coeliac disease I had to recline.

Side effects include flu like symptoms and bones aching to begin with but in the end get better.

John

[christaylorParticipant]

Hi Mavis,  Thanks for the message.

I agree with what you have written albeit I have not got one yet but I  certainly will do so, it can be parked in the garage ready to use at anytime.

Regards Chris.

 

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