[ElizellenParticipant]

Well it is good news that they feel you are fit enough to go straight to the chase, Ivan

Like you I was put straight on the CDT and had my stem cell transplant in August last year.

I was surprised about them still being allowed to use thalidomide but my consultant explained that one of its properties is that it stops cells from forming. This is good if it is attacking cancer cells but was disasterous when it got into developing foetuses and therefore stopped their limbs from developing all those years ago.

Just a terrible example of the old saying "one man's meat is another man's poison" I suppose.

I was lucky in that I experienced no "Dexattitude" at all during my 5 cycles of CDT, so you might get away with only being a bit tired now and again like I did!!

Wishing you an uneventful journey towards and through your SCT procedure later this year.

Eliz
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[ivanwarwickParticipant]

Eve

Yes they did give me all the information about taking the tablets. I'm most impressed with the nurses and my Consultant at my hospital in Antrim N.Ireland (Laurel House), I'm luck in that's its only about 10 minutes from my house.

I'm at my caravan right now in Portrush (north coast of N.Ireland) its my retreat and I have decided to start my CDT tomorrow not today, the reason being I'm having my daughter and son down to stay and we are going to have a BBQ tonight, as I have no idea how I'm going to react to any of the tablets I though I would leave it for one more day.

Ivan

[ivanwarwickParticipant]

Eliz

Thanks for that, how did your SCT go in August and how have you been since.

Ivan

[ElizellenParticipant]

I feel guilty as I had really no problems before, during or after it except for continued pain from crumbled vertebrae that happened before diagnosis.

The Stem Cell Harvest was done in July and meant a couple of days in hospital and three sessions, unfortunately they only got enough cells for one procedure (just over the minimum 2 million think) but lots of our other members here managed to release twice or three times that number!

It was a weird sensation lying there watching my blood wizzing out and into a big sort of washing machine, hurtling around several sets of tubing then returning down another line into me again, but I just sat and read books on my IPad to pass the time.

I did have to stay an extra night when the dressing over my femoral line "wound" bled like billyo after it was taken out, but no other problems.

Then my Transplant at the end of August (delayed because of me wanting to visit my Mum for her birthday on 12 August).

The transplant was not painful at all. First I went down to theatre to have a Hickman line put in which meant I had two dangling tubes near my collarbone which allowed them to take blood and give drugs without constant injections.

Then a heavy dose of something to kill off my cells (melaphalan I think but am a bit hazy on drug names). Then the transplant when they dripped several bags of fluid into me over a few hours.

I did as they suggested and sucked lots of ice lollies and ice pops while it was dripped in, which I think did the trick of me not getting any mouth soreness or gastric problems. They had warned me that I would probably have sore "tubes" right from the mouth down to the bum and to take unscented babywipes for use later, but I had no soreness at all!

Then it was just a question of waiting patiently till my immunity built back up again. Boredom was the main problem, but I did sleep a lot in between trying to eat hospital food, as I had very little appetite.

So really just a question for me of passing the time till they decided I could go home again, no pain or much discomfort at all.

Again the only problem I had was just before going home as I reacted badly to one of the pre-discharge drugs and had a couple of days of vomiting before they re-prescribed something else and let me out.

Since the procedure I have just been taking things easy, slowly feeling stronger. I was as weak as a kitten on release even thouh I had tried to get up and about while in hospital to get some exercise for my legs.

Now nearly a year later I am feeling "well in myself" though not very mobile due to continuing back pain. I only see my Specialist about every three months now but also go in to have an infusion of bone strengthener (Zometa I think) once a month.

We have a shop which luckily is so specialised that my customers are willing to phone or email me to arrange an appointment to buy their stained glass supplies, so that keeps me busy a few times a week and helps keep the cash flow trickling in.

I have just started at an "active back group" with the hospital physio department and surprise myself at how vigorously I can do 10 one minutes worths of exercise on the various "stations" of their circuit but am still not ready to get my gym membership reinstated. Time will tell!

I hope I have not bored you too much but once I started writing I couldn't stop! A touch of "verbal diarrhoea" I am afraid. 🙁

Lots of love
Eliz
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[BADGERParticipant]

Hi Ivan

Good luck with your CDT it really worked for me the only other thing I would say is its much easir to take the steriods with a yogurt in the morning and you will need a laxative as thalidomide can cause constipation.
Did you know how the discoverd that thalidomide worked for myeloma, they were treating someone who had leprosy(thalidomide is used a lot to treat this disease) when they found someone also had MM the Thalidomide worked better on the MM than the leprosy a EUREKA! moment. Let us know how you get on with the treatment

[ivanwarwickParticipant]

I have just started CDT today so I'm on my way. Well I have started CD and will be taking the T at bedtime. Now its a waiting game. Very informative Eliz about your experience I'm not sure how I will react to any of this however I'm optimistic. I cant believe that I have just taken that many table I normally don't let a tablet pass my lips. Boy what a change.
Thanks for all you help

[CarolBradley1Participant]

So sorry to meet you like this – we all understand how shocked you and your family must feel. I don´t know if this helps but I was diagnosed in 2005 in my early 50´s and remained very well until last year. Even when they decided we had to start treatment I was still working full time although I did feel very tired by then. Anyway, here I am, just recovering from sct (stem cell transplant) and slowly coming round.
Good luck with you doctors – there are so many amazing treatments available now please take heart from that. New drugs and combinations are constantly coming along as I am sure your medical team will explain much better than I can.
So glad you have a lovely family around you and that you are so close. Thinking of you all.
Carol

[ivanwarwickParticipant]

Thanks Carol

That is great information most encouraging, I'm on my third day of CDT and still not reaction to any of the tablets thank goodness although It's still early days, the only thing I'm getting is the hiccups and if that's the only side effect I'll be so glad. Did you get treatment in 2005 if so what treatment did you get?
Regards
Ivan

[CarolBradley1Participant]

Hi Ivan
No treatment other than a monthly injection to help with the anemia – but no chemo or anything. I plodded along quite well like this until last June when my paraprotien spiked when I was offered a place on the Myeloma 11 drug trial using Revlimid. This seems to be working for me at present.
Glad to hear your symptoms are minimal to date – lets hope for the best, you should be fine as you are in such good shape.
Best wishes
Carol

[lgibboParticipant]

Hello Ivan I too am newly diagnosed but you have come to the best place this website is the best for info and talking to people in the same position as yourself.Stay positive x x

[MinParticipant]

Hi Ivan
Good hiccups cure. Half a teaspoonfull of sugar on the back of the tongue for a short while then chew it. works for my man Google hiccups +sugar

Min

[JetParticipant]

Hi Ivan

Crying is a very good thing. It relieves the body of stress. I cry most days. But I also do other things too.

Everyone with myeloma seems to have it differently, there are different types of the disease, different add-on problems and different medications, so it's rare to find someone who has it the same as you do, but from my own experience, once the initial treatment (usually 4-6 months) was over, the remission period is almost like being "normal" – whatever that is for each of us.

Anyway, good luck and let the tears flow – they're part of the healing process too – for all of you.

Best wishes
Jet

[JetParticipant]

I felt exactly the same about the numerous tablets. I counted them up and on the first day of the cycle, the maximum was 45, but I've seen other people post on here with more. 🙂

If it's helpful, I'm writing a blog about my experience, living with myeloma: jetblackliving.wordpress.com. There is one early post entitled 45! which even includes a photo of all my tablets for that day laid out. It's funny, but you do get used to it. For me, it was the side effects more than the tablet taking that was a pain.

[JetParticipant]

Eliz Ellen – that's a great idea! Thanks for posting. x

[MinParticipant]

Welcome aboard Lesley,
I hope you will find yourself popping in from time to time, your post went almost unnoticed, but let me take the opportunity to welcome you to the best place on the webb for mm sufferers in the UK.
Hopefully we can lend an ear to you from time to time or listen while you have a rant.. Dex makes you do that, even when you dont want to.
Someone here will be a little way ahead of you on the journey and able to offer you the benefit of there knowledge.
My husband is the mm er and he has been battling on for 2 years exactly with just about every problem that there is to get with mm. (Trust him to be different) bones kidneys failed sct's you name it he's had it.
I don't think I could have coped with his illness without the help and advise I have found here, I hope you find it equally useful if you need it.
Regards
Mn

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