[AmelieParticipant]

John is now feeling pain in his ribs and hip.
He had a successfull sct in August 2010, pp kept dumping until half a year later when they were down to 1.3. Then they started raising again – now they are around 6.

He told me he thinks it is on it's way back 🙁 We will see what the doctor says on Tuesday. Right before Christmas he didn't mention anything about treatment needed for now.

How long does it take from you start feeling pain until treatment is needed?

I know it is impossible to give answers to this individual disease, but I appreciate anyway to hear about your experiences.

[PerkymiteParticipant]

My understanding is that 3 consecutive increases in PP is a sign that the remission is over and the cancer is starting to rebuild.

I am not at that stage yet so cannot comment on the pain angle. Although at my last appointment I reported that I had some pain in my neck and it was not the wife. My consultant, after studying my blood results for a minute, said it is highly unlikely to be related to Myeloma.

Kindest regards ? vasbyte

David

[DaiCroParticipant]

Hi Amelie,

I officially relapsed 10 months into my SCT remission and 12 weeks into my Velcade remission… and both times I 'knew'… although to be fair I gave this latter a 50/50 chance. Yes there were niggles but then again there are always niggles. For me it was more my 'Goodbut' principle… i.e. I felt good… but knew that I should have been feeling so much better.

John will know… or certainly have his doubts… but he will have to trust the medics and the bloods.

Best wishes to him either way.

Dai.

[tomParticipant]

Hi Amelie

Am sure you know I had a successfull sct in December 2009 and am still in remission 😀

But yes I have pain right ribs and Hips bu I have put that down to "Old age" and hard work over the years putting a strain on iccle ole me :-/ and My Dr has confirmed that the MM is not back 😎 and I might be wrong but dont levels go up and down over the months?.

Good Luck to John and heres wishing its Just "Old Age" and not the MM back

Love
Tom "Onwards and Upwards" xx

[AmelieParticipant]

Thanks a lot for your replies.
His PP has been raising for more than 3 times, but everything else seems to be perfect, so the doctor didn't seem worried last time.

Today John was less concerned and said the pain could just be old age, just like you said Tom. The pain in his ribs isn't new, already when he was in the hospital he was told they were affected by the disease, but the hip/leg pain is new. Hopefully it is nothing serious.

Love
Amelie

[kaychappersParticipant]

Hi Amelie I had my SCT in September and my PP has risen for the last 3 blood tests, but my consultant said she is not worried due to my HB rising consistently. When I had to have treatment it was because I became anaemic and that is what they will look for rather than rising PP. Myeloma is so so different for everybody. I do wish you both all the best. Kay x

[AmelieParticipant]

Thanks Kay, that is nice to hear!
What exactly is HB?

I am looking very much forward to hear what the doctor said on Tuesday. It is going to be a tough couple of days though – on Monday my favorite aunt is having a heart surgery 🙁

[kaychappersParticipant]

It will be a tough few days, but for me the waiting is the worst. Once you know what is happening at least you can start to deal with it. HB is haemoglobin which makes the red blood cells which carry oxygen around the body. It fell and I was exhausted. My consultant said 'it proves to me you cannot make healthy blood and we have to start treatment'. So unless that happens this time, they will keep monitoring me. Will keep you in my prayers Kay x

[AmelieParticipant]

Thanks for the explanation and your good wishes – we will pray for you as well.
Love
Amelie

[AndySParticipant]

Hi Amelie,
Has anyone suggested that the pain John is getting in his ribs might be caused by shingles? I had two episodes of shingles in eighteen months prior to diagnosis with MM. The first time, I had classic shingles with the characteristic chicken pox rash and the second time mainly pain around my ribcage but with only a tiny short lived rash. For months during my initial CDT treatment I complained of rib pain identical to shingles, I was told that it was probably a manifestation of Myeloma and nothing was done to treat it. Eventually a small rash appeared, the doctors diagnosed shingles and I was given antivirals, a week later it was gone. Shingles is known to be associated with Myeloma so I expect John's doctors will have already thought of it but you never know.
Best wishes to both of you.
Andy

[AmelieParticipant]

Thanks a lot for your reply!
John had serious skin problems and he has been regularly to the dermatologist who checked for everything including AIDS (!), but they never saw any link to his MM which I find VERY strange since I have read numerous reports from mm patients telling about different skin problems.
However they finally gave him Antihistamines which help very well. So yes I guess it could be shingles, we will see.
Best wishes
Amelie

[GillParticipant]

Fingers crossed for John I know that in Stephen's case his blood does not give a very bad pp reading but his "boney" damage (spine, hip rib and sternum) tells all.
Good luck gill

[AmelieParticipant]

Thank you Gill!
Did I understand you correct that Stephen has an ok pp, but bone damage anyways?
Thanks for the good wishes and same to you!

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