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Thread: Myeloma?

  1. #1

    Myeloma?

    Hi
    I have been having numerous tests to find the cause of some gastro problems and change in bowel habits, I got a letter this week saying I was being urgently refered to a Haematologist as my last bloods had identified an Ig M Kappa Paraprotein, saw my GP last night and he mentioned this was usually associated with blood cancers, but this was not his field and I really needed to be refered to get a proper diagnosis....
    Have already had an Endoscopy and I am having a colonoscopy tomorrow.
    I don't know the full blood results or levels but all that comes up on web with the information I have is Multiple Myeloma.... What does anyone else think?
    I am a 43 yr old female.
    Many thanks for reading and thanks for any advice in advance

    Flame x

  2. #2
    Administrator Top User Didee's Avatar
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    Hi. How did you go with this?

    http://www.cancerforums.net/threads/...ng-for-results

    I am sorry but we are not doctors and can't help diagnose you.
    It is frightening not knowing what test results will tell us.
    Trying to self diagnose on the web with doctor google only tends to make us freak out more, often for no reason.
    Good luck with your tests and I hope sincerely that you do not have cancer.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  3. #3
    [QUOTE=Didee;126084]Hi. How did you go with this?

    http://www.cancerforums.net/threads/...ng-for-results

    Results were clear but some ducts were left behind and operation had to be repeated, the leaking has stopped sort of.. I do still get some discharge but not liquid like anymore so I'm not really concerned.

    Just been not right in myself for quite a while, Have had a few results come back with varying degrees in my Kidney Function, so they have listed me as at risk of Chronic Kidney Disease, but this latest test was mainly because of Gastric Inflammation which can be quite painful and uncomfortable, I get really tired and seem to pick up all the infections going....
    Maybe I just need a long hot holiday lol....

    I am one of those people who would rather be prepared for the worst then anything better than that is a bonus plus I would then be prepared with what questions I would need to ask.

    Thanks for your reply

    Flame x

  4. #4
    Administrator Top User Didee's Avatar
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    We know when there is something wrong with us and we have to keep pushing, as you are doing to try to find out what is wrong with us. It can be a long and daunting journey till we get some answers that satisfy us.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  5. #5
    Got a phone call today from the Gastro specialist who ran the tests that showed up this problem, he was just ringing to see if I had received an appointment with Haemo and how I was doing... Who said the NHS didn't care!!!!
    He did just confirm these Ig M Kappa Paraprotein (not one to try typing if drunk lol) are high and could be indicating Multiple Myeloma or Mgus, so just a waiting game I suppose.
    Does anyone know how long it takes from seeing the blood specialist I will get a proper answer.

  6. #6
    Administrator Top User ChemoMan's Avatar
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    Quote Originally Posted by flame View Post
    Got a phone call today from the Gastro specialist who ran the tests that showed up this problem, he was just ringing to see if I had received an appointment with Haemo and how I was doing... Who said the NHS didn't care!!!!
    He did just confirm these Ig M Kappa Paraprotein (not one to try typing if drunk lol) are high and could be indicating Multiple Myeloma or Mgus, so just a waiting game I suppose.
    Does anyone know how long it takes from seeing the blood specialist I will get a proper answer.
    Hi Flame
    You will get your answer soon. Its alright no need to panic, even if by chance you have cancer this little wait will not kill you. This period of waiting for results is acknowledged around here to be the most difficult part of the journey, so many what ifs it drives you crazy.
    If you think of a question for the doc remember to write them down and take the question to the doctors appointments, that way you will not forget them.

    Good luck
    Age 62
    Diffuse Large B cell Lymphoma
    Stage 2a Bulky presentation
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    Still alive in 2019 !

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  7. #7
    Seen haematologist today and paraprotein has gone........
    Just wants to repeat blood test in 3 months to keep an eye on things but all looks good.
    Will update after repeat test

  8. #8
    Administrator Top User Kermica's Avatar
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    Good for you, flame, I am glad for your good news. Now, go and enjoy!

    Good health,

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 67
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.
    December 2017 - Biopsy of external iliac node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.
    March 2018 - Copanlisib failed, treatment stopped 3/28. New plan is to go to Dana Farber on 4/16 for case review and treatment recommendation.

    May 2018 - did not qualify for clinical trials at Dana Farber. Tumors need to get larger to be considered. On consultation w/Dr. Armand at DF and my onc, have decided to take a break from cancer treatments. Will have a biopsy of the mass in my sinus discovered in scan at DF and to get the aneurysm repaired as it has developed a potentially catastrophic penetrating ulcer. Surgery scheduled for 7/12.

    September 2018 - biopsy of mass in nose shows transformed DLBCL throughout. Assessing options for this negative development.

    October 2018 - started 6 to 8 cycles of R-CHOP. Goal is to get to full remission to open up other options.

    February/March 2019 - PET shows four hot spots following R-CHOP. referred to Dana Farber for stem cell transplant. Pre testing all good, accepted for Auto Transplant. Will begin inpatient process about April 1.

  9. #9
    Administrator Top User Didee's Avatar
    Join Date
    Jun 2010
    Posts
    11,461
    Great news.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  10. #10
    Thanks and I wish everyone who has replied and those waiting for diagnosis all the luck in the world.

    I am waiting for my fundraising pack now from Macmillan Cancer so I can turn this the last couple of weeks into something positive.

    xxx

 

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