[kparkerParticipant]

My 71 year old dad has just been diagnosed with myeloma after being admitted to hospital with bad back pains.  All other tests good – kidneys good and no calcium in blood.  He is fit and healthy normally

He has been home for two weeks and just finished his first cycle of CDT.  his back pain has gone but he has terrible pain in his thighs when walking.  All the x rays etc were clear.  He is currently not mobile and waiting for the nurses to visit tomorrow to manage pain.  He is also covered in a rash over chest and back and groin.

None of the nurses or doctors seem to know what the pain is.  Has anyone else experienced this? and the Rash

I am in such shock and despair for my parents who I am very close to.  Will my dad get through this and will he ever enjoy life again and be able to do anything he once enjoyed.

I’m just reaching out for some support as I’m finding this all so difficult to see my dad go through this.

karen

[peterlParticipant]

Hello Karen,

So sorry to hear about your dad.  Please don’t despair, it may not be as bad as it initially looks.  Do you know what kind of MM your dad has?  Is it PP (paraproteins), lightchains…?

I was diagnosed last year with lightchain MM.  Am in a kinda remission period at the moment.  I had my last cycle of VDT in Feb’ this year.  And I certainly do have hip/thigh pain.  I’ve just had a skeletal xray and due a spine mri in a week.  After that I see the consultant – and I’ll tell you what she says…  Unfortunately, MM is fairly unique to the patient concerned, and it may be difficult to extrapolate your dad’s condition from anyone else’s experience (inc mine!).  But I’ll tell you if I get a definite diagnosis.

Also, there are some incredibly positive messages posted by rebeccarollinson – latest under the treatment section (I think).  I’m sure she won’t mind me mentioning her name here.  And it might be worth reading them if you have time.  Very best wishes to you and your dad.

Peter

 

[christaylorParticipant]

Hi Karen, I am Chris and was diagnosed in June 2014 at the age of 61, I can understand that you are worried about your Dad and hope that messages like these will help to reassure you.

After I came out of hospital I undertook CDT treatment and after about a year I was able to have a stem cell transplant. However it was pretty tough along the way but it is manageable and you can get really good results. I had terrible amount of bone damage, ribs, spine and both legs were the main issues and since the the SCT I’ve had 3 vertibrea cemented and my right femur has now got a steel rod inside. I still need to take heavy dose of pain relief for the other parts of bone damage though.

like your Dad yes had skin rashes you may find other side effects due to the toxic treatment hence why your Dad will be given lots of support drugs. The pain that he is in I expect is due to bone damage due to the Myeloma the Consultants will be aware of this once all the skeletal scans are completed. You may hear the term Lytic lesions, I understand these are holes in the bone, and bone thinning which causes bones to break. But they can give Bone strengthening treatment Zometer once a month which helps the bone damage.   I at the beginning was in a terrible state but now I have managed to have a holiday and I go for little walks or potter around in the the garden.  Like Peter has said by reading the posts you can find lots help and information and I sincerely hope your Dads treatment works well along with your support I am sure it will.

take care CT.

[kparkerParticipant]

Thank you Chris and Peter for taking the time to reply to my message. The pain in his legs is being managed well now with the morphine and they believe it to be muscle weakness from not being mobile. Rash going down as well so all was going well until Dad this week has become incredibly tired as they have increased the thalidomide and he is now very low and depressed.

I guess this journey is going to have lots of ups and downs

best wishes to you both

kind regards
karen

[christaylorParticipant]

Hi Karen, good to hear some of the issues your Dad was having have improved a little, the fatigue is a big issue with me even now after being drug free for some time. It’s the drugs the pain relief and MM itself, the other thing you may want to tell your Dad is that when taking Thelidomide it can give you tingling dumbness in the toes and fingers as a side effect. I was 100mg a night and would get nasty little cramps in my fingers and toes and now it’s left me with numbness in my toes that I think will be permanent . However if he can manage with the side effects it gives which are not very nice you will find it really does work in knocking MM back.  Also I use to take my Thelidomide late at night say 10pm at the same time with a couple of biscuits and Horlicks. Reason being the toxic nature of it and the nurse said about nightmares which I did have from time to time. Wish you both well, take care.

CT

[magicmomentsParticipant]

Hi Karen

My hubby had CDT and became quite suddenly became terribly depressed after cycle 2 after lots of reading we realised it was more than likely the dexamethasone (in some centres in america they prescribe antedepressants as standard) saw GP and he was prescribed sertraline an antidepressant also accessed some talking therapies both have worked well. I think we often focus on the physical aspect of cancer focusing on the treatment and beating the disease that we forget to address the psychological effects and needs which are just as important.

Good luck

Some hospices have day units where he can aces complementary therapies and talking therapies especially for patients with cancer as they are really different to those with normal depression.

 

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