This topic contains 16 replies, has 12 voices, and was last updated by 
tom 12 years, 8 months ago.
Hi all my friends out there!
It looks like my honeynoon with MM is over. Went to Consultant today and although my PP is only 15, because if has been steadily on up on last three readings, and because of bone pain, which she now thinks is MM related rather tham muscular or arthritis, I am to have a bone marrow biopsy and skeletal survey, with the likelihood of starting CDT.
CDT would not be a precurser to SCT but hopefully a strong enough treatment of itself for the time being.
So my friends, some help please, and good news stories if there are any!
How many of you sailed through it? How many of you lost your hair? Did you hsve heperin? (Consultant says I can learn to do it myself! The less I have to do with Hospitals the better!)
How many rounds did folk h ave and did you have three week or four week cycles.
Lots of questions I know, but I am sure the answers and hopefully some reassurance is out there.
Best wishes to you all and especially those of you having a hard time at the moment.
Mavis x
Hi Mavis
Well am sorry the Honeymoon is over.
I was on CDT prior to my SCT, so Bad news is it made me tired and weak:-/ Good News It was the start of putting me into remission:-D (still no hair loss) then SCT I had that December 2009 it was OK Ish?
Would I go through it again? well it has to be a big yes. oh and lost my hair when in hospital for SCT, but thats no big deal for me as am half hairy anyways Lol. could i give myself an Injection :-0 No way they did ask if I wanted to be taught hot to Inject my growth factor injections I said No thank you al come up here to visit lol.
Did I sail through it all?? Yes I think in all honesty I did, yes it had its hard times and i felt why? but as I said its worth the bad bits.
Good Luck with it all and you know just take one day at a time when you start it all
Love
Tom "Onwards and Upwards" xxx
Hi there Mavis,
Sorry to hear you are having to join the CDT gang!
Hubby Pete was diagnosed with MM November 2011 and was started on CDT straight away and is now just finishing his 4th month. He has Cyclophosphomide 500 mg and Dexamethasone 20mg once weekly on Tuesday, and Thalidomide (originally 50mg) but upped to 100mg on third month every evening. He has been having monthly cycles and has been doing really well with very few side effects. Being honest the only bugbear has been the Dexamethasone which leaves him with the high for a couple of days and then the downer on Fridays. He is also eating me out of house and home!!!
He also injects every morning with Clexane which he was shown how to do.
Hope this helps you Mavis and I wish you the best of luck.
Lynxx
Dear Mavis so sad to hear you need to start treatment but hopefully CDT will knock the little blighter back !! I remember feeling exhausted and very weak after the first 2 cycles One bit of advice dont force yourself to do things because you feel you should be able to do them , rest when your body tells you . I didnt lose my hair either One of the most annoying things was altered taste which can change from one day to the next so you might be better eating little and often , eat whatever you fancy Good luck Mavis we are all with you love Bridget x
Hi Mavis. I'm on my fifth 4 week CDT cycle and its not been too bad at all. Still working part time, more tired than normal, but thalidomide makes you sleep like a log. Steroids are the worst bit for me, but manageable. And the hair question…mine has got slightly thinner, and greyer, but that could be just age! Hope you get on OK and you are as lucky as I have been, ie it works a treat. Penny
Dear Tom. Bridget, Lyn and Penny
Thank you all for your encouragement. I knew I could rely on my friends on here! I am awaiting bone marrow biopsy and full bone scan then I will know when I start. Being an optomist I am still hoping I can delay it a bit longer if I drink loads and get my kidney figures down.
You all take care of yourselves. One thing about the dreaded MM, it makes fighters of us all doesn't it!
Love
Mavis xx
Hi Mavis
Lets hope this is just a blip and your BMB and your test comes back negative,Giving your condition you will not go on the intensive pathway,so should have a break in treatment.Slims has injected himself for over 6 months,because of blood clots,so you will soon learn
He did not loose his hair,but it got very thin,and blocked plug wholes up all the time,So I cut it very short to make it more manageable.
Everyone says the BMB is not nice,Slims due for another one today,he does not seem to mind it,he says it depends on doctor doing it,
Water is so important to keep your kidneys clear,your taste will change daily so drinking is important.
Any way good luck with your test,at least you are well prepared and the news does not come as a shock Eve
Hi Mavis I was on CDT and thalidomide gave me lovely night sleeps. Dex kept me awake and made me irritable when I came off them each time. But all in all I still continued to work 4days a week. I injected myself each day and I found it was ok but I agree with others don't do it if u don't feel comfortable with it. All the best kay x
Hi
I'm due to start next week. We can keep each other 'company' on the journey. Its good to have this forum. I am down for stem cell transplant when the chemo is finished.
Keep us all updated.
Good Luck
Tina
Hi Mavis and Tina
I am on the myeloma xi trial and had the revlimid instead of thalidomide – they are similar drugs. I'm back on the revlimid as maintenance after transplant and it still makes me tired.
The dex gave me sleepless nights and a few days of sleepiness and low mood after it finished, (you have four days on then a few days off it.) look out for any infections and contact the hospital if you have a high temperature, you don't need infection slowing you down.
The cyclophosphamide can make you feel sick so you might need an antiemetic for a few days each time you have it.
I took soluble aspirin as I was very low risk for clots and thrombosis but I managed to stay at work all the way through the chemo phase and only gave up when I started the gcsf injections prior to transplant.
I had no hair loss either but my sense of taste went totally up the creek and high fluid intake is a must, both to protect the kidneys and to prevent the constipation, got to learn to love fibre!
Good luck with it.
Helen
Hi Mavis,
I just checked in and looked up and down this thread a few times because I know I answered earlier… ???
Still, it's either in the ether or otherwise I binned instead of sending… its 'Dexday' TM, so nothing would surprise me.;-)
CDT was not exactly pleasant… putting chemo-chemicals into your body and asking them to seek and destroy has to have some side-effects… but nothing half as bad as I imagined.
I had a mild nausea problem at the beginning but that was soon sorted by even more tablets… I felt fatigued all of the time and hyper half of the time (yes, with 'DEX' TM this seeming anomaly can easily be achieved) 🙂
I had 4 cycles in total but was almost in remission after 3. (1 Cycle = 3 weeks active + 1 week rest) I thought that CDT was a miracle treatment… bringing me down to 0 (zero, zilch, nought, nawt, nothing) from 3,500 kappa light-chains (yes, I was in a really serious, grown up mess when I was finally diagnosed).8-)
I hope it does the same for you and that it holds MM at bay and you in a happy state of remission for a long, long time to come.:-D
Much love
Dai.
No Dai you are not wrong I put my previous post just after yours! So there must be a gremlin somewhere. How are you doing with the revlimid?
Love helen
Hi Helen,
That's alright then.;-)
On my second week, with my second Dexday yesterday… so feeling tired but not much sleep.:-/
My shoulder is improving slowly, so I am hoping that that is the Rev doing its work 😎 . I have also felt a little sore in the areas of my ribs where pain was recurring, so once again I hope that that is the medicine doing its job.
I go back in to the Daycase Unit for a bloods check-up (white cells and Neutros next Monday)… so its 'finger's crossed' that they haven't dropped too much.
Much love
Dai.
I first had Heparin way back in 2006 when I first started CDT. It was then withdrawn and I developed a DVT. Anyway when I hesitated as the nurse was showing me what to do, my husband offered to do the needful. That soon got me motivated! I also did the GCSF injections and have had Heparin for the last 9 months. I like to do the injection first thing in the morning, and I need to have the radio on!
Hi Kay, Tina, Helen and Dai
Thank you for replying and especially Dai saying it beat his MM back so quickly. I guess I could tolerate four months "in hope"! Common thread seems to be tiredness and dex days!! Typical when I was just wanting to be licenced as an Associate Priest in the parish we have retired to, and hoping to start a Bradford Myeloma Support Group.
Dia, do hope the dex will do some good for you. I remeber when I had it, when having my plasmotoma removed from my back, it took away all the pain. I couldn't sleep though, but put it down to being in Hospital. Four weeks without sleep!! You can imagine how glad I was to come home.
My Consultant hasn't come back with dated for full body xray and BMB as she said she would, but at least it gives me time to see if I can improve my kidney function by taking lots more water.
Trouble is, because of the creatine figures, she has said to stop taking diclafenac, which is the only drug that seems to cope with the underlying pain of my arthritis, so life isn't all that great at the moment as I can hardly move. Perhaps she is right, and some of the pain is MM related, but I can't help noticing that lots of folk on here have lots of pain even while on pretty agressive treatment.
Still, I am determined to keep positive especially as so many of you are having very rough times at the moment – Brigett and Dai especially.
Lots of love to you all.
Mavis xx
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