A website for discussions about any type of cancer, including lung cancer, breast cancer, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others
+ Reply to Thread
Results 1 to 10 of 10

Thread: Organ donation and lymphoma.

  1. #1
    Administrator Top User Didee's Avatar
    Join Date
    Jun 2010
    Location
    NSW Australia
    Posts
    9,595

    Organ donation and lymphoma.

    This topic was raised on another forum and I was horrified to find that I had not even thought about this.

    http://discovermagazine.com/2008/apr...seased-organs/

    Last week in Discoblog, we discussed a case involving a 15-year-old boy, Alex Koehne, whose undiagnosed lymphoma was spread to four other people through the transplanting of his organs. Two of the organ recipients have died, and the other two are undergoing treatment.

    So how could multiple organs carrying disease be harvested and transplanted without anyone's noticing?

    Contracting a serious and sometimes lethal disease through a donated organ is a rare occurrence, but some risk exists with every transplant. In the past few years, HIV, hepatitis, tuberculosis, rabies, and West Nile virus have all reportedly been transferred to organ recipients through donations. The risk in taking organs from people who have just died is clear: The chances are higher than normal that the donor's body contained a potentially fatal disease.

    More in the link.
    I will be checking this out as I am an organ donor and would hate to even remotely have the chance in passing this on.

    The donor was undiagnosed but I wonder about us survivors.
    Aussie, age 58
    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.

    Out of all the things I have lost, I miss my mind the most.

  2. #2
    Administrator Top User ChemoMan's Avatar
    Join Date
    Jun 2008
    Location
    South Australia
    Posts
    8,478
    Blog Entries
    2
    Hi

    The thought that I could pass on lymphoma to someone is enough for me to not even consider being a donor. Nothing anyone can say that would make me change my mind either. i would not be able to live with myself if the above scenario actually happened.
    Age 58
    Diffuse Large B cell Lymphoma
    Stage 2a
    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 on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    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.

  3. #3
    Administrator Top User Didee's Avatar
    Join Date
    Jun 2010
    Location
    NSW Australia
    Posts
    9,595
    Well, you would be dead but that is beside the point, lol.

    I agree.
    I am just about to start a trip by car for a week, literally in an hour.

    I have notified Hubby, sons and sister to say no should the worst happen.
    I will be taking myself off the list.
    Aussie, age 58
    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.

    Out of all the things I have lost, I miss my mind the most.

  4. #4
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Location
    New York
    Posts
    4,344
    Well, you would be dead but that is beside the point, lol.
    No, not necassarily...I stopped donating blood when I found out I had lymphoma. My assumption was that it was possible that I could pass something horrible to someone else and just decided that I couldn't risk that. I also changed my organ donor status...on that happy note,

    Good health,

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

    Age 63
    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 Rituxin, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.

    Remember the Rules!

  5. #5
    Senior User rizza's Avatar
    Join Date
    Jan 2010
    Location
    Melbourne, Australia
    Posts
    436
    I have previously investigated this, as organ donation is something I feel very strongly about. In Australia a cancer survivor can donate blood after 5 years in remission, except for those who had a blood cancer, we are never allowed.

    As for organ donation it depends on individual circumstances. So if something happens and they want your organs, they look at the fact that you had lymphoma, how long ago etc and decide at the time.
    Last edited by rizza; 03-16-2011 at 09:01 PM.
    30yo female (27 at diagnosis)
    Mediastinal Large B-cell Lymphoma
    Started six cycles of R CHOP 21 on 8th Jan 2010, completed 23rd April 2010
    4 weeks of daily radiation, started on 18th May 2010
    First clear PET scan 5th August 2010!
    2 years cancer free June 2012!
    My blog: http://dlbcljourney.blogspot.com/

  6. #6
    Administrator Top User ChemoMan's Avatar
    Join Date
    Jun 2008
    Location
    South Australia
    Posts
    8,478
    Blog Entries
    2
    Hi

    i would not be able to live with myself if the above scenario actually happened.
    I can't believe I actually wrote that

    I have previously investigated this, as organ donation is something I fell very strongly about. In Australia a cancer survivor can donate blood after 5 years in remission, except for those who had a blood cancer, we are never allowed.

    As for organ donation it depends on individual circumstances. So if something happens and they want your organs, they look at the fact that you had lymphoma, how long ago etc and decide at the time.
    Rizza so what do you think now about organ donation in your specific case now
    Age 58
    Diffuse Large B cell Lymphoma
    Stage 2a
    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 on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    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
    Senior User rizza's Avatar
    Join Date
    Jan 2010
    Location
    Melbourne, Australia
    Posts
    436
    Well, I'm still on the registry. In Australia even if you're on the registry it still comes to down to whether your family say 'yes', so I figure there's no way they wouldn't know that I'd had lymphoma. I trust that they would then make the right decision about using my organs.

    As for the blood donation, they say lymphoma patients can never donate as it is dangerous for us, not for the person receiving the blood. Why do you think this is?
    30yo female (27 at diagnosis)
    Mediastinal Large B-cell Lymphoma
    Started six cycles of R CHOP 21 on 8th Jan 2010, completed 23rd April 2010
    4 weeks of daily radiation, started on 18th May 2010
    First clear PET scan 5th August 2010!
    2 years cancer free June 2012!
    My blog: http://dlbcljourney.blogspot.com/

  8. #8
    Administrator Top User ChemoMan's Avatar
    Join Date
    Jun 2008
    Location
    South Australia
    Posts
    8,478
    Blog Entries
    2
    Hi Rizza

    My thoughts are that it is far too risky to give blood as the chance there are stray cancer cells is pretty high. For that reason I would also not donate organs . There's plenty of blood in organs and the risk is too great. My feeling is that the need for organs is so great that this need overrides common sense. Mind you thats just my opinion. I'm going to see if I can find more on this.

    Cheers
    Age 58
    Diffuse Large B cell Lymphoma
    Stage 2a
    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 on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    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.

  9. #9
    Newbie Top User joepet's Avatar
    Join Date
    Dec 2008
    Location
    Japan
    Posts
    1,033
    In most places, there is a lifetime ban on giving blood if you've ever had lymphoma.

    A laundry list of disqualifications from the American Red Cross:
    http://www.redcrossblood.org/donatin...etical-listing

    Specifically pertaining to cancer:

    Eligibility depends on the type of cancer and treatment history. If you had leukemia or lymphoma, including Hodgkin’s Disease and other cancers of the blood, you are not eligible to donate. Other types of cancer are acceptable if the cancer has been treated successfully and it has been more than 12 months since treatment was completed and there has been no cancer recurrence in this time. Lower risk in-situ cancers including squamous or basal cell cancers of the skin that have been completely removed do not require a 12 month waiting period.
    The rules may vary by country (for example, in Japan, you are not allowed to donate if you are homosexual...) But bottom line, if you've had lymphoma, do NOT donate any of your body parts to anyone!

    (hmm, if blood is bad, I wonder what the risks of transferring lymphoma via sexual relations are...)
    My Story: http://cancerforums.net/viewtopic.php?t=11396
    Diffuse Large B cell Lymphoma
    Stage 1AE (localized in colon)
    Began six cycles of R chop 21 3rd Dec 2008
    Finished R chop 21 Apr 2009
    Complete remission as of May 2009
    Confirmed April 2010

  10. #10
    Regular User RockyMiranda's Avatar
    Join Date
    Apr 2011
    Location
    Des Moines, IA, United States
    Posts
    29
    I was called by my local blood bank not long after I initially got diagnosed and asked to donate, and that was when I learned I could never donate again with HL being a "blood cancer" and the possibility of someone else getting it from my blood. It was a shame, seeing I have O negative, but understandable. I would imagine organ donation is not allowed as well, so I took my name off the registry. Even in the rare chance, I would never want to put anyone else through this.
    Rocky

    Age: 33
    Hodgkin's Lymphoma
    Stage 2B
    Diagnosed in 2009, age 30
    Neck, chest, under arms
    6 months chemo, every 2 weeks: ABVD
    relapse April 2011
    High dose chemo+Auto SCT, Stanford Hospitals 8/3/11
    Feel'n great since!

 
+ Reply to Thread

Similar Threads

  1. Lung cancer/Medication Donation
    By gaia in forum Lung Cancer Forum
    Replies: 5
    Last Post: 02-09-2012, 07:31 AM
  2. Multi-organ system cancer... smoker...
    By MiamiMathGirl in forum Lung Cancer Forum
    Replies: 7
    Last Post: 04-01-2011, 08:56 PM
  3. Transmission of Donor Mel by Organ Transplantation
    By HaoleBoy in forum Melanoma and Skin Cancer Forum
    Replies: 0
    Last Post: 05-24-2010, 03:34 AM
  4. Donation of Tarceva Medication?
    By Lorri in forum Lung Cancer Forum
    Replies: 10
    Last Post: 04-29-2008, 11:53 PM
  5. Question about Wig donation?
    By bratt21499 in forum Uterine and Endometrial Cancer Forum
    Replies: 0
    Last Post: 04-27-2005, 05:58 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts