[MothasParticipant]

So one year on from my SCT, the last week I’ve started feeling pain in my left rib pretty much where the lesion was before the transplant. I’m pretty sure it’s in the bone and not a pulled muscle.

f****it. I guess this means I’m coming out of remission after 14 months.
Any advice gratefully received.

Tom

[alicenorthParticipant]

Hi Tom

Are you absolutely certain about the pain? I only ask because I’ve read your blog previously and you mentioned how you start to feel pains, real or imagined as you come up to your hospital appts. Are you coming up for a review by chance? I’m not trying to make light of the situation because I absolutely know what it’s like to imagine all kinds of symptoms as the time comes round for bloods.

I don’t have bone issues so can’t offer any advice. You’re only option, I guess, is to wait until your next appt or get an earlier one. One way or another, it’s a shitty waiting game. Are you feeling physically okay otherwise?

A

[rebeccaRParticipant]

Tom, sorry I have no advice and sorry it’s back – guess all I would say is regroup mentally and prepare for the next round – were you on maintenance also?. 9 months post SCT and think my figures are not as good as could be but not alarming. I have started a meditation/mindfulness course as I feel I was strong during treatment/SCT, but do not feel I have the same strength of mind for another round just yet so I am working on my mental state to make me feel as strong/confident as before. I know you have your own mental strategies but would suggest you “brush up” on any lost discipline that seems so easy to lose when in remission. Am sure you will seek different consultant opinions to formulate your plan as you will have multiple choices at your age. Best wishes

Rebecca

[andygParticipant]

Hi Tom.

There seems to be a lot of people reporting bone pain post SCT at the moment on Facebook. From what I’ve read in replies on Facebook people are more sensitive to their bodies post SCT and obviously every little set back the thought of relapse springs to mind. It seems it could be the old site is just being a bit tender at the moment and hopefully just being a pain. From my mind I would find it strange for lesion to comeback in the same place as an old one – but I’m no expert.

Like I said I’ve picked this info up via different social media because I haven’t been through SCT though I can relate to thinking every ache and pain is down to MM. I was told that if the pain is still there when at rest it needs investigating but still doesn’t  necessary mean it’s MM.

Get it checked out even if it’s just to put your mind at rest.

Every day is a gift.

Andy

[pollyParticipant]

Hi Tom

You mention the pain is in the left rib as before could it not be a weak spot that’s now susceptible to all kinds of everyday things that we do without thinking especially when we feel better, it’s normal to get the jitters when pain comes especially nerve pain that can be a bitch my advise would be get it checked out if its worrying you untill then no relapse unless told so

Polly

[charisma4Participant]

Hi Tom,
I am 11 months post sct,and my pains returned several weeks, ago and I feel very tired. I have had x-rays, and blood tests, which have found nothing untoward.Consultant’s advice is to get more rest, as it is still early days post sct. My son-in-law is an oncologist, and he told me that aches and pains are nothing unusual, and that I’m expecting too much too soon, as sct is a massive trauma to the body.
Don’t let the gremlins worm their way into your mind,just get it checked out.
Lesley

[dickbParticipant]

Tom,

Our fears always play on our minds and we always think of the worse. Wait until confirmation one way or the other from your medics. There might be a small chance that it’s unrelated.

[MothasParticipant]

Thanks to everyone who has replied. I’ve got my MRI this morning so I’ll get a sense of where things are soon.

I found this on Myeloma beacon it’s a Medic’s reply to a similar situation. As with all Myeloma issues it’s a complex picture:

Chronic pain sometimes becomes an issue with the destructive lesions. Adequate pain control is very important.

If there are new pains, even in controlled myeloma and on Zometa, it is worth having another look with plain X rays or MRI. New fractures (from old myelomatous lesions) can occur. One must also know that it may also be unrelatated to the myeloma or myeloma-induced bone disease — degenerative changes or the like.

[Kazzam2Participant]

Hi Tom, just read this, I get pains in the same part of my spine, ribs and sternum, I am still on Zomorph, I was told I will always have some pain as there was a lot of bone damage (late diagnosis), so I just have to control it. I had my sct in January 2013, so if my appetite goes or I am more tired, or pain is worse, I worry that it’s coming back. I am sorry this is probably of no use to you, its just we are in the same boat. I hope your MRI went okay and that the pain settles down, hopefully a blip. Sometimes we can overdo things, so rest up.

Regards

Karen

[MothasParticipant]

Hi Karen
my latest bloods were all negative as was my BM from a couple of months ago. however this was the case at the original diagnosis too so I’m not going to get ahead of myself. I don’t secrete, I don’t show except in MRI. my myeloma is a tricky bugger.

[Kazzam2Participant]

Aye, it is a tricky bugger and no 2 cases are the same, which makes it even more difficult.
Wishing you well.

Karen

[scott9Participant]

Hi Tom,

Like you, I was pretty shocked when my cancer came back as I was hoping for remission a bit longer post SCT. I had my SCT last August and the cancer returned in July. I’m now on Pomalidomide and Dex. I take 20 steroid pills once a week and get about two hours sleep that night. The pomalidomide has given me no problems so far. I’m on my second session and due to have eight. I won’t know if its working for about three or four sessions. If it works the average remission is about 18 months, but that includes those for whom it doesn’t work and they only last about six months so in reality, if it works it should keep things going for a couple of years by which time hopefully something else will come along. I live in hope that it will work!!!

Good luck to you in this battle.

Scott

[dickbParticipant]

Hi Tom,

With my last post i forgot to mention that in April I had an increase in pain in my shoulders exactly where it was before. Like you I thought it was on the increase and informed the mediccs. They arranged an MRT and it showed no worsening at all since the last one November last year. Every blood test since then has come back with the same reading of IgG at around 24. Every other indicator is ok so they have classed me as stable and I’m not having any active treatment for the MM, just Zometa for the bones. So, as I said before, wait for the results from the consultant and don’t jump to conclusions.

[MothasParticipant]

Thanks to everyone who has taken the time to reply and read.

Unfortunately now officially confirmed, the MRI scans show what my consultant called a “tiny but measurable” increase in the size of a rib lesion. I’m out of remission after only getting 14 months from my SCT.

I’m going to have a small amount of radiotherapy to zap the lesion and then possibly on to a trial or failing that Lenalidomide/Revlimid. Consultant putting a brave face on it saying she’s got a number of patients taking it who have gone on for years without relapse, I’m also not a high risk myeloma patient and there is plenty of stuff in the pipe line.

After feeling the pain in my rib, I just knew it was back so weirdly having it confirmed is a relief. Annoyingly I feel really well. As Tom (snr) would say.
Onwards and upwards.

[dickbParticipant]

Hi Tom,

Sorry to hear it’s been confirmed but with a bit of Positive Mental Attitude there’s no reason why can’t achieve a second remission and for a long time.

[Author]

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