[OutdoorsPaulParticipant]

Hi Vicki/Colin
Yes i still feel tired but once up and about with exercise you feel much better.If i am tired i just have a snooze.I have been off work since last Aug and my employers are very supportive.
cheers Paul

[PerkymiteParticipant]

I have had a SCT and radio therapy (15 to 20 months ago) and at the moment I am on a plateau, my Paraprotiens are stable at 2.4(ish). I have no pain and am able to do most things, gardening, shopping and some DIY.

What I do before I travel away from Taunton, my home, is to make sure I have any medication I need for the trip PLUS enough for two weeks. I take my last letter from the hospital, regarding my last appointment, and the print outs of my neck x-rays showing the metal work etc… . Travelling abroad I take out travel insurance, Spain cost me £224 for myself and the wife. With regard to travel insurance I went to my Doctor and asked him to give me a list of the things I need to declare to be bomb proof, he did a print out of my medical records and crossed out the things that were now spent and of no interest. I am not interested in cheap insurance I want bomb proof insurance, if I have a problem I do not want my wife lumbered with a medical bill because I wanted to save £20.

We make sure we split any luggage between bags so I might have two bags but they are light and not one heavy bag. I make sure I drink my 3 ltrs of water by taking 6 x 500clt bottles and I fill them up each day, abroad I buy bottled water from the supermarkets. I do not eat fish abroad and look for well cooked food only and eat fruit I can peel. Lastly I try not to do anything rash, like diving in a swimming pool or anything that might put a strain on my bones. I am an oldish(!) man 69 and I deliberately act my age ? I have nothing to prove, if you know what I mean. And, my wife fusses around like a mother hen

Hope this helps ? I am sure others can add to it. Happy travels

Kindest regards ? vasbyte

David

[VickiParticipant]

David

Thanks so much for this. These practical tips will prove useful in time. That said at the moment we won't be going far as Colin hasn't had a date for SCT yet. He has peaks and troughs of wellness and sometimes is quite full of energy in the scheme of things.

We try to eat a good diet and use the same principles as you, peeled fruit, wash the salads, no salad bars and plenty of fluids.

Still for now living in the forest of Dean in Gloucestershire will give us plenty to do for now.

Best wishes and stay well
🙂
Vicki & Colin x

[JSPParticipant]

My Dad was diagnosed 6th April 2012 …early days started CTD on 9th April pain seems to be getting better but….. side effects off DEX seem to be terrible looking at changing to PREDI otherwise Chemo seems to be working but early days ( heres hoping) ,still learning about this terrible disease but need a bit of good news……Fingers crossed!!!

[AliParticipant]

Hi Paul,

Im just wondering how things went with your "priming" – what does that entail please and what sort of initial tests did you have?.

Its my Mum with MM, diagnosed Nov 11 aged 57. Had 5 cycles of RCD on Myeloma IV trial and due for initial appt re SCT on Thursday this week.

I hope all runs smoothly now for you on your road to remission…….please keep us posted.

Take care Alison

[PerkymiteParticipant]

Hi James, Are you new to the site? If so a warm welcome and if not I apologize for not recognizing you.

Best of luck to your Dad, the drugs can have a different affect on different people so there is no "golden rule or treatment path? so to speak. As you say it is very early days yet and the Doctors have to work out which treatment is best.

I know you will search the WEB looking for a magic bullet, we all do, but this site has all the information you will ever need on Myeloma and if you are really stuck there is always the MyelomaUK Myeloma Nurse who is free to call. Have a good look around, knowledge is power, it will perk you up I am sure.

Kindest regard ? Vasbyte

David

[PerkymiteParticipant]

Hi Vicki and Colin, Peaks and troughs are par for the course with Myeloma. I think recognizing that the guy/girl you love is still the same person when their personality is being changed by the drugs seems to be the hardest thing to bear for a careers. Stick with it be positive there are good times ahead and get out into that beautiful area you live if only for a short car ride just looking at the trees busting out with life.

Kindest regards – vasbyte

David

[VickiParticipant]

Hi there,

Sorry you've had to experience this in your family. It is hard but have faith in the medication and the medical teams. They do a great job. The dexamethasone aren't popular. My pattern colin has just finished a 4 day block and he's very relieved, the side effects have made him feel a bit spaced out this time, and flushed in the face. I hope your dads treatment works well and wish him a speedy recovery to normal health

Vicki and Colin x

[OutdoorsPaulParticipant]

Hi Ali
Sorry for late post as I have just spent a week in hospital.
Before anyone goes for a Stem cell transplant the medical team need to check that the persons heart,lungs are in working order,so various function tests are carried out and results sent to the consultant.
Cyclo priming lasts for 12hrs and you have various bags of chemo dripped through your system and bags of fluids via drip to maintain the balance. Its a preparation process pre stem cell transplant to help kick the cancer further back.
cheers Paul

[AliParticipant]

Hi Paul, thanks for the reply.

I hope you are feeling well? now after your week in hospital.

Take it easy Ali 🙂

[VickiParticipant]

Hi David and anyone else who is listening!,

I was wondering. Colin had a stay in hospital over the bank holiday weekend until Wednesday just gone. Came out Wednesday lunchtime with a load of antibiotics. Looking back he always seems to feel worse at the end of his cycle. Say days 15-21 onwards. This time he finished cycle cycle then 3 days later in hospital with chest infection. Anyone else experienced that? Also currently colin seems to have no energy and seems to go light headed quite a lot. He's had his week off treatment and his treatment delayed a week ( at least).is this normal? My imagination is running riot! Assistance if you can 🙂

Thanks Vicki x

[HelenParticipant]

Hi Vicki
I had several chest infections while on the induction chemo,usually at the end of the cycle too. And i never felt iller than usual nor did I have a cough. Dexamethasone is a curious drug and it has a nasty habit of hiding infection, by making you feel well and cutting inflamation, giving bugs space to sit and muliply. The best plan is to take your temp every day and if it is above 37.5 for 2 hours consecutively then phone the hospital. Opportunistic infection strike very quickly so you need to act quickly. I'm sure Eve will comment on this if she sees it as Slim had some nasty chest problems which caused all manner of trouble
Love Helen

[VickiParticipant]

Helen, thanks very much. It's reassuring and helpful!

Have you had and SCT ? Do you mind me asking how long it took for you to get from the start of the induction therapy to the SCT? I think colin is getting fed up now. He has just completed cycle 7 of dexamethasone,cyclophosphamide and revlimid. We are awaiting results of cycle 6 when we see the consultant next week, fingers crossed. Colin is apprehensive about the SCT due to the worry of infection and the fact he has taken quite a few antibiotics so far.

Thanks for your help. Have a good day

Vicki 🙂

[HelenParticipant]

Hi Vicki
Potted history
I was diagnosed 3.2.11.
Anaemic but no obvious bone or kidney damage, 60% bone marrow involved.
Started Myeloma xi trial 10.2.11, on Revlimid, Cyclophosphamide and Dexamethasone.
Went to complete remission after 2 months but 4 cycles is the minimum, so finished induction in June.
Cell harvest July,
SCT 15-17 August
9 months later
Just back from trip to NewZealand, on Revlimid maintenance, and back to work end of this month.

Wasn't nice, had lots of problems, still have a few, but I'm alive, still in complete remission and better than I was just before my diagnosis.
So hang on in there and hope for the best.
Love Helen

[VickiParticipant]

Hi Helen,

Thanks your post has cheered me up! I feel positive most of the time, as does Colin, but he has dipped a bit just recently so I'm looking for all those good news stories like you. We'll keep going,as you do, but sometimes it's hard as you know. Roll on next consultant visit, perhaps mm will have disappeared ha ha!

Vicki

[Author]

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