[graemeandrewarthaParticipant]

Thanks to all for thoughts on travel insurance.

I am lucky and feel so well at the moment but will need insurance and will not travel without it as not worth the risk.

Regards

Graeme

[graemeandrewarthaParticipant]

Hi Alan

I completed my SCT late November 2014.

The bottom line is it ‘aint pleasant but as others will tell you it is doable.

The staff I had were brilliant (Southampton General Hospital) and at all times I had a problem, sickness, sore throat etc they came up with a solution (normally in a bag)!!!!

Take advice already on this website as to what to take in and how to get yourself through it and before you know it the discharge date will come round.

In my opinion it is worth doing. Hope it all goes well for you

Graeme

[graemeandrewarthaParticipant]

Hi, I  went on the same additional drugs with no ill effects and I am 67.

Your dad needs to remember that it was the pregnant women that had the problems with thalidomide not the men.

He will, if same as my wife and I, get a “safe  sex” lecture because of what it can do to women who get pregnant. At 67 & 66 it raised a smile with us all!!!!!!

Look on any sheet for any pill and there is a host of possible side effects. His consultant knows best and thalidomide has been known to help in the treatment of Myeloma.

All the best

Graeme

[graemeandrewarthaParticipant]

Thanks for the reply Maureen,

I have been going through the Internet and have found a company for £789.00 covering my Multiple Myeloma and Crohns for 31 days.

This was done via their Web site so further checks required. I will make a note of yours and look into it.

Regards

Graeme

[graemeandrewarthaParticipant]

Hi to all and many thanks for all your helpful replies I have printed off and highlighted the relevant points you have all indicated.

I wondered why a fella I saw (obviously being taken to a ward) had a bag of toilet paper!!!!! now answered.

Regards to you all.

Graeme

[graemeandrewarthaParticipant]

Hi Rebecca. Many thanks for your lovely reply it was appreciated and I will even print it off to take with me. It is a daunting experience even with the information and backup that I have. At moment I have a small list to take including eye shades and ear plugs. Your suggestions will be in there. Phone, laptop with movie’s standard now I imagine.  Love jelly etc so also on list.

I tried searching for previous experiences but didn’t find anything hence my topic. Only thing with computers,  put the wrong thing in and you get the “computer says no” so I will try again.

Many thanks

Graeme

[graemeandrewarthaParticipant]

Hi Helen.  Sorry to hear about your uncle and his problems. I started chemo and steroids going on to thalidomide after the first month. I have been lucky with no after affects from anything so it seems strange that he has been affected so quickly.  I am sure the hospital will find out what it is that your uncle is having a problem with, possibly a reaction to a combination of pills.

There maybe others on this forum who can give you more information on this problem but stay positive and I am sure with your help your uncle will get past this unfortunate problem.

Regards

Graeme

[graemeandrewarthaParticipant]

Hi Den. I am now completing my 5th cycle. I started with 100mg of thalidomide then upto 150 and have been on 200mg for about 2 months. There are different reactions to all pills and potions supplied.  These then get adjusted as time goes on depending on how it is reported back to your doctor. My steroids were reduced when the Thalidomide went up. When has he been advised to take the Thalidomide, I find about 8.30pm as they can make you sleepy. If taken later maybe why the “thick head” in the morning.

Regards

Graeme

[graemeandrewarthaParticipant]

Hi to all. I have MM and in my 5th cycle of CDT and being offered SCT after. All your experiences have given me encouragement and will go with it. The section on how to get through and what to take is interesting and will help. 3 cheers for phones/laptops/kindles etc. Thanks to all

[graemeandrewarthaParticipant]

Hi Dawn

Welcome to this very helpful forum with plenty of help and support. I was diagnosed this March and now on my 4th cycle of chemo, steroids, thalidomide and a few other things thrown in. Bone strengthening just started.

My main advice at the beginning is to take someone with you especially at the beginning then discuss it later so that you both agree on what was said. Later when you are in a routine it becomes easier. Same with pills and potions (mine have their own container in the cupboard). Can be boring but needs must!!!!!!

Steroids in the morning (keeps you buzzing in day) & thalidomide at night (supposed to make you sleepy). Carry on with your life but try not to dwell on it.

You will see some have put reams of their medical history on their site. I just let the consultant tell me if all is going well and don’t get bogged down with the complete medical names. Purely a personal thing but reduces my worrying.

As you will see plenty of info and from those of the same age and gender if it helps you.

Take care and all the best for the future.

Graeme

[graemeandrewarthaParticipant]

Hi Treakle (love the name)

As before sorry that you are on this site but there are plenty of positives. I was diagnosed in April 2014 after a number of months being treated for muscle strain by my GP  (you can see my initial joining intro “Start of a long Journey”). Initially there are plenty of hospital visits but once the cycles begin, mine are down to every 28 days to pick up pills and potions, then you can start to plan. It might not abroad (I had to cancel a holiday to Cyprus) as my doctor was not happy for me to fly once the Thalidomide was started. It is not easy at the start, with pills at certain times and the monthly infusions but there is time off. Look for the positives, plan the holiday you want, but while you are getting into a routine why not have the bonding session in a cottage or such like. Does your dad work still. I was lucky in the fact I was due to retire anyway. Do you or other family live close to attend any appointments with him as even now when I come out my wife will sometimes correct me on what was actually said. You will read some stories that are sad but that is the nature of the disease but there are plenty of good ones as well. It is a shock to start with and there will be some downtime. If lucky (like me) a good cry and support gets me over the worse. I hope this helps you on the start of this Myeloma journey.

Regards

Graeme

[graemeandrewarthaParticipant]

Hi Vicki & Colin.

Appreciate your reply and as said there are different treatments out there.

I am lucky as my wife has been with me from day 1 and attends all visits with me (well I can’t be expected to remember everything). If there is a right time then as I was due to retire anyway more time can be given to the fight.

I don’t envy anyone who still has to work and get treatment plus the rest recommended each day. Family certainly boosts me.

My pain at present is only in the left leg. Off for bone strengthening on Monday so will see if that helps.

All the best to you both.

Graeme

[graemeandrewarthaParticipant]

Hi Mavis

Thanks for the reply. TEAMM trial is where newly diagnosed Myeloma patients are asked to take tablets daily for 3 months. The tablets can be placebo or the real thing. They are trying to reduce infection in Myeloma patient’s. It does mean filling in a daily diary with temperature and giving them samples and blood on a regular basis. As I am now retired it’s not difficult for me, just have to get into a routine. If it helps for the future patients then I am all for it.

Regards

Graeme

[graemeandrewarthaParticipant]

Hi to all.

Many thanks for the replies. I had no side affects to the chicken pox so count myself lucky. I am on the TEAMM trial so IF I am on the real “stuff” did this help.

No indication as to where I caught it so apart from self imposed quarantine all has gone well. I wanted to go to the Southampton meeting today but advised not to “just in case” which I can appreciate.

Luck to all.

Graeme

[graemeandrewarthaParticipant]

Hi Susie

My main pain now is in the left leg/hip area which is where the bone has eroded. I like you am ok when sat or lying in bed. Its that sudden involuntary movement that hurts the most. I am  fine once I am up and moving around, it eases a lot until the next sit down.

I am trying not to take to many pain killers and have got used to it and get prepared for each shift in movement.

Hope that helps

Graeme

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