[dengilbertParticipant]

Hi folks I was wondering if any other MM sufferers on CDT have the Rib Pains after the weekly Cyclophosphamide ? My Husband seems to experience this for a few days after taking them as well as the initial hot flushes a couple of hours later !!
I think I remember seeing someone post something “No Pain No Gain!!” hopefully it is correct?
He’s doing really well otherwise his PP started at 37 and are now 9.5 after 2 cycles of CDT his results are due again on Friday so fingers crossed for another decrease ? My best Xmas present ever would be Remission but we daren’t think too far ahead !!
He has no chance of SCT as he has too many Co Morbidities ie Heart Failure COPD and Rheumatoid Arthritis ! Although with the latter I’m of the opinion it was Smouldering Myeloma and not RA ??
Anyway one day at a time is the order of the Day and as the saying goes
” Keep taking the Tablets folks !!” Best wishes to you all Denise xx

[stanley-1960Participant]

Hi Denise

I had 4 cycles of CTD and after taking the first course( a day after each cyclophosphamide intake) had severe rib and back pain. I was told by the consultant this was a good sign it was working on the plasma cells in the bone. I have a plasmacytoma on the 5th rib.The pain eased off with each cycle to the point i had no issues on cycle 3 and 4.Best wishes to hubby on the journey the PP results after 2 courses look very promising. After 4 courses my readings put me in complete remission( apart from the tumour) so for some CTD can work wonders.Good luck for Friday.

Stanley

[mhnevillParticipant]

Hi Denise

I echo what Stanley says. Encourage your husband with the end result. I had six regimes of CDT. And have now been in remission over two years so it was certainly worth it.

Best wishes to you both.

Mavis

[dengilbertParticipant]

Many thanks for your replies Stanley and Mavis, we saw Malcs Consultant yesterday and mentioned the Rib pains he seemed to think the same no pain no gain !!he advised taking Paracetamol , but for someone adverse to taking tablets it’s not easy convincing him to take them.
His PP,s haven’t dropped much this month possibly 1.5 but his Consultant is pleased and he has had 2 massive drops previously!! he did say however next month might show more of a drop?
Anything a step closer to remission is a bonus !! And as you say Mavis keep going !! We will and I’m thrilled that you both did so well on CDT it gives us both encouragement that it will work !! Keep well both of you and I will let you know how he does, the Doctor has changed his start day of cycle 4 to Wednesdays as he gets his Zolendronic Acid Infusions monthly on a Tuedsay plus Dex plus Cyclo and last month he was really quite poorly so hopefully that will make a difference for him ?? Kind regards Denise xx

[alanjamesbyrneParticipant]

Hi all I’m on week 3 of chemo and on the same chemo tablets ,I to have sore ribs ,if I cough or sneeze it feels like my chest is going to explode and it’s really painful ,I’ve had to stop chemo and steroids now as I have a chest infection so now on antibiotics ,but chest still hurts it even gives me a sore neck and I struggle to turn my head ,I am on clinical. Drug trials ,and in 3 weeks have seen no one from that department ,I find that bad to say the least no support all ,trying to find things I can drink .as taste buds are shot ,orange and lemon barley water is good but I don’t like the reduced sugar one it leaves a nasty taste ,food tastes crap ,still as I say onwards and upwards ,no pain no gain

[mhnevillParticipant]

Hi Alan

How I sympathise with you. I remember well the horrible taste of food!

I am surprised there is no help seeing you are on a Trial. Have they given you phone Nos. to contact? If they have do use them. I often wonder what it is about Myloma and why we don’t seem to get the MacMillan Nurse care that other cancers do. We have a haematology specialist nurse, but she cover Lukemia as well. In four years I have never had a nurse specialist take the initiative and contact me. Mine knows who I am, as she is in and out of Day Ward, but I have never sat down and had a conversation with her.

This is why I say to new folk on here, learn as much as you can and become your own Specialist.

Hope you find something to tempt your appetite soon. It needs to be something with a strong taste. I was always sorry I don’t like curriesM

As you say, no pai no gain! Look forward to a long remission once the Trial is over.

Very best wishes.

Mavis

[dengilbertParticipant]

Hi Alan sorry to hear about your Chest Infection! Unfortunately that May have masked some of your symptoms ?
Hopefully the Antibiotics will do their job and you can get back on the Chemo?
We are more sceptic now about the No pain no gain addadge !! as last Cycle my Husband had a real bad month of feeling really low as his rib pain was quite painful and we assumed that he would get a good drop in his PP,s however it didn’t !! He has plateaued at 9.6
However so far on cycle 4 no rib pain!! So we really can’t predict anything on this journey!!!
As for your taste buds I can remember my Husband having problems eating as everything tasted awful he lost about a stone and a half and he really looked ill !!
However his Research Nurse said just eat anything ….. Crap basically and he did Jellies with fruit in are his favourite !! once the Steroids kick in your appetite will improve dramatically !!! kind regards Denise

[alanjamesbyrneParticipant]

Thank you ladies you were both very helpfull ,I will wait until next week when I return to hospital ,a week tomorrow ,and if they don’t come and see me ,I shall complain ,just feel that I’m on my own a bit with it all ,went to mcmillian about a year ago ,when first diagnosed ,the lady said your going on a journey ,talking about dieing,I stood up and walked out ,I thought I am nowhere near ready to talking about that ,so it’s put me off ,any thank you once again for your  input ,Mavis and Denise ,as I always say onwards and upwards

[andygParticipant]

Hi all.

As something of an “expert” of the side effects of Cyclophosamide, after over 2 years on it, all the above can be laid at it’s door. Taste – forget about it nearly everything tastes metallic! Good for weight loss though. Even beer takes some drinking. My sense of smell went. Nausea – mildly for 3 days post Cyclophosamide. Concentration effected too. Even my eye sight suffered. I used to start my cycles on Sunday so I could enjoy the weekends with my wife and I could suffer by myself whilst she was at work.

Don’t take one PPs result in isolation it’s the trend that matters. Hopefully the next test will show the downward trend again.

Hi Mavis.

I thought we all got a specialist nurse! Guess I was wrong there. We have a Macmillan nurse who deals with all the Myeloma patients. Actually on our second since I was diagnosed. When I was first diagnosed she was brilliant and talked us through everything including the financial side of things and even made a home visit. She has her own phone number so we could get straight through to her.

Every day is a gift.

Andy x

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