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Thread: Symptoms worth worrying about?

  1. #1
    Senior User Kimv's Avatar
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    Symptoms worth worrying about?

    Hello friends, I have been in remission from AITL for almost 2 years.
    I havenít had any night sweats, fevers, or swelling of the lymph nodes that I can tell. I have been feeling some aching however, in the nodes in my neck and groin since the transplant. My doctor said not to worry about it. Is this typical of post-SCT or should I be concerned? Does anyone else who is in remission still have these same issue? Since AITL doesnít show up in the blood tests how would I know I am having a relapse? Iím guessing that this a wait and see issue but would like to know your thoughts.
    Feeling 😟 nervous. All the best to everyone. Kermica......heard anything from your scans...
    oxoxoxoxox kim
    Oct. 27, 2015 diagnosed with angioimmunoblastic T cell lymphoma.
    December 2016 began choep chemotherapy-6 treatments 21 days apart.
    February 24 scan showed no evidence of disease!
    Continue choep chemotherapy treatments.
    APril 2016 returned to Stanford for high dose Cytoxan, removal of port, and insertion of Hicckman catheter.
    Neupogen injections daily to increase white blood cell counts.
    MAy 5, 2016 Apherisis.
    MAy 21, 2016 HIgh dose chemotherapy VP 16.
    MAy 24, 2016 High dose chemotherapy Cytoxan.
    MAy 26, 2016 Autologous Stem cell transplant.
    JUly 27, 2016 Scan shows no evidence of disease. Still In remission!
    October 31, 2016 Scan shows no evidence of disease...NED again!
    April 1, 2017 Still NED!

    love strong....live long❤️💜💚💛💙

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Have you been scanned recently? It seems that most relapses are picked up by symptoms rather than routine scanning. I have occasional pain in my ileum, as that is where the AITL had invaded - but it is scar tissue and not the AITL. Noise. Honestly, relapse is not in my consciousness, since the chronic GvHD is ever present. In the grand scheme of things, maybe that is actually a plus.

  3. #3
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    I know when my brother relapsed soon after the auto, he had the "B" symptoms again - night sweats, fever, rash, etc... Now after his allo, he has had PET scans to look for relapse, and NED so far. So I would guess that if you continue to suspect something, you could talk to your doctor about a PET scan. I know that with my brother, any little symptom that pops up scares him that the cancer has returned. He has his two year big appt. on April 24th and is very anxious to be past it. I haven't been in your shoes, but I'm sure you feel the same way. Hope it turns out to be nothing.

  4. #4
    Senior User Kimv's Avatar
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    Thanks Deb and Jim,
    Ian not scheduled for a scan until September. My doctor has put me on alert regarding symptoms but I feel great and only have mild twinges in the groin where most of the larger lymph nodes were located. I am thinking it is as you noted Po....scar tissue from all of the swelling and removal of the node. And yes, I do worry every time there is more than one aching sensation in my nodes. I am probably too sensitive at this point but like your brother....am very cautious. Thanks for your input. It makes me feel better just knowing you are here. xoxoxoox k
    Oct. 27, 2015 diagnosed with angioimmunoblastic T cell lymphoma.
    December 2016 began choep chemotherapy-6 treatments 21 days apart.
    February 24 scan showed no evidence of disease!
    Continue choep chemotherapy treatments.
    APril 2016 returned to Stanford for high dose Cytoxan, removal of port, and insertion of Hicckman catheter.
    Neupogen injections daily to increase white blood cell counts.
    MAy 5, 2016 Apherisis.
    MAy 21, 2016 HIgh dose chemotherapy VP 16.
    MAy 24, 2016 High dose chemotherapy Cytoxan.
    MAy 26, 2016 Autologous Stem cell transplant.
    JUly 27, 2016 Scan shows no evidence of disease. Still In remission!
    October 31, 2016 Scan shows no evidence of disease...NED again!
    April 1, 2017 Still NED!

    love strong....live long❤️💜💚💛💙

  5. #5
    Senior User
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    Kim, How are you? I've been thinking about you a lot this week given the fires in Paradise, and the edge of Chico. Are you affected in any way? It is a terrible thing that is happening in CA. I hope you are safe and feeling well also!
    Deb

  6. #6
    Senior User Kimv's Avatar
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    HinDeb,
    Our home has been turned into a shelter for friends whoíve lost their homes. It is so heartbreaking to hear the stories of people who barely made it out. Our community has come together and people are helping everyone...the smoke and the smell are stomach churning....but we will get through this. Thanks for your concern. Hugs, Kim
    Oct. 27, 2015 diagnosed with angioimmunoblastic T cell lymphoma.
    December 2016 began choep chemotherapy-6 treatments 21 days apart.
    February 24 scan showed no evidence of disease!
    Continue choep chemotherapy treatments.
    APril 2016 returned to Stanford for high dose Cytoxan, removal of port, and insertion of Hicckman catheter.
    Neupogen injections daily to increase white blood cell counts.
    MAy 5, 2016 Apherisis.
    MAy 21, 2016 HIgh dose chemotherapy VP 16.
    MAy 24, 2016 High dose chemotherapy Cytoxan.
    MAy 26, 2016 Autologous Stem cell transplant.
    JUly 27, 2016 Scan shows no evidence of disease. Still In remission!
    October 31, 2016 Scan shows no evidence of disease...NED again!
    April 1, 2017 Still NED!

    love strong....live long❤️💜💚💛💙

  7. #7
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    We are blessed at some level even to escape with our lives - as it is with the cancer journey. Life does not always go according to plan, but if we are alive, we can make the conscious decision to begin anew.

  8. #8
    Senior User
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    So many parallels. I'm so glad you are safe. And that you are able to help others. Your strength becomes their strength. All of our journeys are so intricately connected with others - its times like these that we can get a glimpse.

  9. #9
    Quote Originally Posted by Kimv View Post
    HinDeb,
    Our home has been turned into a shelter for friends who’ve lost their homes. It is so heartbreaking to hear the stories of people who barely made it out. Our community has come together and people are helping everyone...the smoke and the smell are stomach churning....but we will get through this. Thanks for your concern. Hugs, Kim
    Kim,

    I hadn't remembered you lived in that area....dang it.....I am so sorry you and your loved ones are having to battle this. It looks totally horrifying. So know am sending lots of love and hugs your way, and best Karma. Please keep us posted.

    David
    67 yrs old
    March 6, 2012: Diagnosed Anaplastic Large (T-) Cell Lymphoma, Stage 1 (ALK-)
    3 rounds of CHOP unsuccessful.
    Beginning mid-June, 2012, received 6 cycles of Brentuximab at Huntsman Cancer Institute, University of Utah. Autologous bone marrow transplant in November of 2012.
    17 radiation treatments for "consolidation" purposes between Dec. 26 and Jan.17.
    100 day post BMT check-up (2/26/13): NED. Pet scan on 7/10/13: Still NED.
    One year post transplant check-up: Still fine; NED.
    18month post-translant scans, etc. All fine, save a bit of arthritis.
    11/14/14: 24 month post transplant check-up--still NED.
    5/15/15: No NED this time. Relapse confirmed/ started every 3 week brentuximab
    Allo transplant in Feb 2016.
    100 day post transplant scans in June 2016 fine.
    3 yr. post SCT check up: all fine, no issues.

  10. #10
    Senior User Kimv's Avatar
    Join Date
    Dec 2015
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    422
    Thank you David. There are so many homeless people here itís hardbto believe. The family of 4 that Iíve been housing are looking for a rental... There is nothing to be found. Itís heartbreaking.Thanks for your good thoughts. Keep em coming yíall. xxooxxooxmkim
    Oct. 27, 2015 diagnosed with angioimmunoblastic T cell lymphoma.
    December 2016 began choep chemotherapy-6 treatments 21 days apart.
    February 24 scan showed no evidence of disease!
    Continue choep chemotherapy treatments.
    APril 2016 returned to Stanford for high dose Cytoxan, removal of port, and insertion of Hicckman catheter.
    Neupogen injections daily to increase white blood cell counts.
    MAy 5, 2016 Apherisis.
    MAy 21, 2016 HIgh dose chemotherapy VP 16.
    MAy 24, 2016 High dose chemotherapy Cytoxan.
    MAy 26, 2016 Autologous Stem cell transplant.
    JUly 27, 2016 Scan shows no evidence of disease. Still In remission!
    October 31, 2016 Scan shows no evidence of disease...NED again!
    April 1, 2017 Still NED!

    love strong....live long❤️💜💚💛💙

 

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