[teds31Participant]

Hi All, I have just been to a gastro clinic as I have a colon problem ,and they say that a operation might be on the cards but as I have MM they say my immune system may be effected and that may stop me having an opperation. I may refuse the operation anyway but has any one had this problem with MM and the immune system. Ted

[HelenParticipant]

Hello Ted
It is nice to see you, I think your surgeon and haematologist need to get their heads together and plan what is the best pathway for you. See if your clinical nurse specialist can fix it. It may be that if your immune cell numbers are still normal there may be no trouble doing surgery and if the surgery is not urgent there may be no need for it. So its a balance of risks and you get to choose after they weigh the risks. You need to ask for the main men to get together and don't get fobbed off til you have a satisfactory answer.
Love Helen

[teds31Participant]

Hi Helen ,thanks for the reply, I also have a chest problem so half the NHS will have to talk to each other 🙂 but the interview was left at more tests on the bowel problem and then we will get to talk again. I wouldnt say the bowel problem was non urgent but I could live without the opp I think,too many other after effects that I dont really need ,if you see what I mean. It was just that she took me by suprise with the immune thing as I had not thought of it before,and I just wondered if any one here had simular experiances. Ted

[tomParticipant]

Hey Ted
My you are avin a two and fro arn't you :-/
As for the chest problem I think all us MM folk have that I do ?:-/
I wonder what they mea about "The Immune system" being effected?? are they saying that us MM'ers cant have an operation as we might have a comprimised Immune system??
Dont let them shrug you off ted get in and ask away why/if and why not 😀

Stay well and stay fit

Tom Onwards and Upwards

[teds31Participant]

Thanks Tom, yes I think thats exactly what she was saying ,though she was not an expert on MM and as we all know its a very litte known thing that even medical people get wrong occationally, looking on this site people seem to have had operations for bone and spine problems,so I dont know. I do know I will ask a lot more questions before I make any decision. Been to the Docs today got a chest infection now hayho!!! onward and upward (a well known saying) Ted.

[anndrysdParticipant]

A few weeks ago I was meant to have a gastroscopy and a colonoscopy. I was also neutropenic as I had the flu. I had asked both the doctor in haematology and my GP if it would go ahead and they thought it would be ok, but when the gastric guys looked at my blood results (after I had drawn their attention to them), they didn't go ahead as the procedures would release bacteria and my body had no means of fighting them off. Perhaps your medics' concerns about your immunity are similar….

[teds31Participant]

Hi Ann,, it all seems very confusing, in my case I have smoldering MM so I dont have symptoms or treatment (as yet) so its hard to say if my immune system has been effected. ted

[adamsp41Participant]

Hi Ted…I have arthritis in both knees and got as far as seeing the consultant to replace my right knee…but once he looked into my mm history and my low blood readings or as they call it "compromised immune system" he ran a mile and flatly refused to do the operation…he seemed really scared that I may not be able to fight any infection post-op …so physio and gel it is then…hey-ho…stay safe…Phil

[teds31Participant]

Hi Jane and phil, It is some thing I have not come across or even considered and it put a new light on MM if we cant have surgery things could be really difficult in the future. Wonder if any one with medical knowledge on here as an opinion. I go to the MM clinic in a couple of weeks I will ask thier opinion. Ted

[HelenParticipant]

Dear Ted
The mm cells develop in the bone marrow by hijacking the antibodies which are part of our immune system.
In smouldering mm there are not so many mm cells but you are more still inclined to pick up infection.
when they reach a critical mass they stop other cell production and wreak havoc then it is the time for treatment and mm is diagnosed
All surgery carries risk
In the elderly or those with compromised immune systems the risks are greater so surgery is weighed to decide if it is urgent or will progress to urgent as Jane describes or nonurgent as Phill and Ann said.
If you had a fractured limb that needed pinning or a perforated appendix and would die without the surgery even with mm it is worth the risk in doing the surgery.
If you have something which is uncomfortable but diet or painkillers will assist, then it is nonurgent
I do think you should speak to your nurse specialist or phone Ellen on the site
Helen
Ps I'm a nurse as well as having mm

[teds31Participant]

Thanks Helen, Thats a big help I knew some one would know. I dont seem to have a nurse specialist, probably because I dont have treament. I do have to go for more tests in a few weeks and the surgen said she would see me after the results are known, so I will wait and ask them then. Ted

[MothasParticipant]

Ted last year I had a colonoscopy as I developed diverticulitus which without going into too much detail is a cyst which grows out of the colon. I wasn't given much choice as it could have been fatal.

I had, had a year of prior treatment with chemo and radiotherapy for my plasmacytoma and the specialist thought that the combo of drugs had killed off a lot of the good bacteria in my gut and left me vulnerable to infection.

It was a very difficult period and I spent a week and a half in UCLH and took around 3 months to recover.

I can't really offer any advise just this anecdote I'm afraid but the important thing to do is let everyone you come into contact with at the NHS have a complete picture of your condition and any treatment you may have had.

At UCLH I told the gastro surgeon and he liaised with my MM specialist (who also came see me in hospital).

[teds31Participant]

Thanks Mothas, thats really interesting your the first person I have spoken to who as actually had the operation.Things with me are not as bad as you discribe and that makes the decition even harder as I could manage it without surgery ,the thing is for how long. As I said before I have a chest problem also, which goes to make things harder, and I am 81 so how long have I got before its too late for any surgery. I will wait and see what the new tests show and make a decition then. Thanks again for your help. Ted

[MothasParticipant]

Ted I believe that Diverticulitus – if that's what you've got, can be treated by antibiotics if it hasn't gone too far. So you may not need an operation.

[PerkymiteParticipant]

This is an interesting debate – thanks Ted. I have MMG and had the usual treatments ending in a SCT in Dec 2010. My MM is now relapsing and subject to the results of a full body MRI scan I am moving onto second line treatment, Velcade and Dex (oh Happy Days). The appointment to decide this is in 3 weeks time to the day.

6 months ago I was diagnosed with advanced Prostate Cancer. At the first Urology meeting I was informed that I would have Hormone Therapy Treatment with 35 Doses of Radiotherapy and an appointment was made for me to see the radiotherapy consultant. This meeting was not as straight forward as I thought it would be! She painted a very black picture of 35 doses of Radiotherapy which would hit the bowel area as well as the prostate and whilst offering the treatment was advising against it. Her reasoning was that I already had MM and that the problems with radiotherapy would not mix well with my trying to survive MM for any period of time. The logic seemed to be I had two terminal cancers one of which was going to kill me and therefore to get the longest time frame I should stick with just the MM treatment and have the hormone therapy treatment at this stage, she added that I could have the Radiotherapy treatment in 18 month to two years time ? if needed! I made a provisional decision to opt out of radiotherapy. I then spoke to my GP, who I am on very good terms, and he agreed that she was being realistic in looking at the treatment for both Cancers and felt her advice was right.

Kindest regards ? vasbyte

David

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