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Thread: Just to say hello!

  1. #1

    Just to say hello!

    Hello to all! I just joined Cancer Forums. I've been on some other cancer forum sites. I really like that this one has a discussion board devoted to stem cell transplants. It's a great resource. As you can see by my signature, like most of you, I've been to hell and back. But I'm still here and still kicking. I like beating the odds.

    I also like that I can make my signature as long as I want! Another forum I've I'm on allows only four lines and it's very annoying. To squeeze my history into 4 lines I have to be the queen of abbreviations! Don't have anything earthshaking to say, but will be following the stories here after this and post as needed.

    Here's to us!

    (Oh, no! For some reason my painstakingly typed out signature didn't save! Rats! Will update another day!)

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Welcome! Sorry about the signature. Some of the moderators and admin have privileges to post a larger signature than others, but you should be able to post a decent signature. If you can send PMs, type it up as a PM and send it to yourself, then you can copy and paste it from your inbox.

    What was your diagnosis, and which type of transplant?
    Last edited by po18guy; 03-04-2018 at 10:14 AM.

  3. #3
    Moderator Top User
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    Hi and welcome, will be interesting to read your story and we like people to beat the odds and Po will help sort your sig

    John
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  4. #4
    Senior User Chef's Avatar
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    Thumbs up

    Welcome Jackie... what's your story?
    Dx NSHL StageIIIA
    CT {groin 6.8 x 3.3 cm} abdomen nodes, enlarged spleen 2/07/16
    Bone marrow, Colonoscopy, Gastroscopy biopsies (-)
    Lung & Heart tests Good.
    Pet scan Worrisome bone marrow 3/17/16
    ABVD 6 cycles started 3/31/16
    Interm Pet (+) 5/19/16
    Stop ABVD 9/01/16
    Pet (+) 10/04/16
    Salvage GDP 10/27/16
    Misdiagnosed from Hodgkins to TCELL ALK NEG stage 4B 12/01/16
    Adcentris 12/05/16 ~ 3/07/17
    Lumbar, Tri-fusion line, G-CSF, Collection 3/17/17 ~ 3/18/17
    Auto stopped due to infections, sent home to wait 3/27/17
    Developed 12 tumors on base of skull, patho = ALK-NEG CD30 4/26/17
    Restart Adcentris 5/18/17
    MUD Allo 8/23/17
    Pet scan NED 12/01/17

    “Each morning when I awake, I experience again a supreme pleasure - that of being alive"

  5. #5
    Hi. Back again. Got the signature figured out, I think. My story? How long of a tale do you want? I will stick with mainly the past year so as not to cover ancient history.

    I've had two transplants, an auto and an allo. The auto was Aug. 21, 2014 and was pretty much a walk in the park. I barely got sick from chemo. The procedure was inpatient. I was very bored most of the time. For the 3 weeks I was in the hospital, I felt like I was just on a really bad vacation. I felt a whole lot worse during the viral pneumonia 2 months after transplant than I did from the chemo!

    The allo was a whole other story. In the words of my doctor, I went through purgatory. I've just passed the year mark, as the allo was on Feb. 21, 2017. My sister was a perfect match and they collected more than enough stem cells, a total of 13,000. 9,000 are still sitting in cold storage if I ever need them (which might be sooner rather than later).

    I was not in complete remission prior to transplant, but no treatment I've done has gotten me into full remission, except maybe the auto transplant in 2014, but that was only for a few brief months. We were running out of drugs to try, so we got me as close to CR as we could and went ahead with the allo. I passed all pre-transplant tests with flying colors except for the PFT. I passed the PFT, but my diffusing capacity was about 60%. The cut-off is 50%. The doctor and I both decided that was an acceptable risk, so we went ahead. Doc informed me he was going to throw as much chemo at me as he possibly could, up to the limits of what I could handle. He sure wasn't kidding!

    The 5 days of chemo and transplant day were largely uneventful. One dangerous side effect of Busulfan is seizures, so they had me on anti-seizure medication. I had a bad reaction, which resulted in extreme dizziness, but that was the worst thing in the first few days. After transplant, it was as if hell exploded all over the place. Extreme nausea, mouth sores so bad I woke up nearly screaming in pain one morning, C. Diff., and hemorrhagic cystitis. I barely left my room after the first day until the last day or two of the 3 1/2 week hospital stay. I had never had chemo side effects this bad before. However, the good news was that the donor cells quickly started working as they should. Once my blood counts came up, they stayed up. I never needed transfusions after I left the hospital. In addition, 2 weeks after discharge the chimerism was above 95%.

    I was discharged to Hope Lodge since I lived an hour away. I returned every day for IV's. I was so incredibly weak I could barely walk or retain my body heat. I was so cold all the time. Within days of discharge, I contracted an awful cough--croup. Croup's primary symptom is uncontrollable coughing, especially at night. Within a week's period, I probably had the equivalent of about 15 hours sleep. Nothing worked very well to control it. Eventually, I took to taking codeine and oxycodone at the same time. That combination drugged me so thoroughly that I could finally rest--sort of.

    Within another few days, I contracted the BK virus. If you don't know what that is, count yourself fortunate. It's a viral bladder infection that lasts at least 6 weeks. Regular bladder infections are bacterial and last only a day or two because they are treatable with antibiotics. Viruses? Well, they just have to run their course. Imagine going to the bathroom every 10-40 minutes around the clock for about 3 weeks, with intense burning, pain, and urgency. I practically lived on pain medication. With the double whammy of the BK virus and croup, I was readmitted to the hospital a mere two weeks after being discharged and spent another 21 days inpatient.

    While in the hospital acute GVHD flared up. In my eyes, of all places. (if someone else had it in their eyes, I'd like to know. It seems sort of rare.) I was in intense pain for nearly a week and in grave danger of losing my sight. In addition, the virus that caused the croup also affected my ears, so I was largely deaf and blind for most of a week. The drug they used to try to treat the BK virus, cidofivir resulted in the rare side effect of extreme tachycardia, approx. 140-150 at rest and 170-180 upon movement. I had some pretty scared nurses! Especially when my blood pressure did the opposite thing and went terribly low! Let's just stop there and say, "It certainly wasn't fun!"

    Finally, everything cleared up. The 60 mgs of Prednisone quickly sent the acute ocular GVHD packing. My eyes, while still causing blurry vision, showed little to no scarring (recent checkups have confirmed no scarring, which surprises the ophthalmologist). My hearing cleared up as well, and the cough slowly subsided. However, I would deal with the BK virus for 5 months until August. Though after the first six weeks, the pain and urgency subsided to manageable levels, my bladder wasn't back to normal until August. At one point, the virus was bad enough that the doctor briefly mentioned removing it and replacing it with a bag. Sometimes, the bladder is so inflamed it never heals and the only option is to take it out. I was so glad that did not happen!

    2 weeks at home and then I was admitted again, this time for low oxygen saturation rates and blacking out episodes. I was put in the Intermediate ICU on high flow oxygen. A bronchoscopy confirmed pneumonia. IV antibiotics worked well, but I was sent home on 2 liters supplemental oxygen. I was discharged 10 days later. By now, it was mid-May. This is what I consider to be the end of my purgatory. After this, improvement was slow but steady.

    Now a year later, I'm doing so-so most of the time. A follow up CT scan (confirmed by a PET) in September showed the lymphoma relapsed again. I started Adcetris, which is working wonderfully! Another CT scan in January showed there's been a 50% reduction in the tumors. I've had six treatments of Adcetris so far. So far, I also have few side effects from it, largely fatigue and neuropathy.

    I still deal with the results of the transplant. I have mild chronic GVHD, manifested mainly as dry eyes and dry mouth. I still experience a lot of fatigue and weakness. My hair has finally come back nicely though, so that's a plus! I thought for a while it wouldn't come back because it took so much longer than the other times I lost my hair. My biggest problem is the supplemental oxygen. I was hoping it would only be temporary, but so far, it's not acting that way. My oxygen blood saturation rates still haven't improved while breathing room air. I'm also currently tapering off Prednisone. I'm finally at 2.5 mgs daily. Tapering off that dosage can make me feel sort of crappy some days.

    I remember, before I did the transplant, that I had asked someone else who had an allo SCT, "Was it worth it? If you had the decision to do over, would you do it again?" Her answer was "Yes." Mine is too. While I'm not where I'd hoped I'd be health-wise, but I'm also not where I could be. I have a lot more good days than bad and still thoroughly enjoy life even with my limitations. In addition, I bought myself time. Adcetris was a bit of a gamble since not all DLBC lymphomas express enough CD30 for Adcetris to be effective. Apparently, mine does. If it keeps working for the full 16 cycles, I might be able to get into CAR-T eventually. Time will tell.

    Until then, I'm living life, cancer or no. This is my mantra now: "I no longer plan my life around cancer. I plan cancer around my life."
    5/12 Dx at age 24 with DLBC NHL Stage 2B presenting as <10 cm tumor in left lung
    5/12-9/12 R-CHOP x 6. Followup 3 month scans
    4/14 Relapse
    6/14-7/14 R-ICE x 2 inpatient
    8/21/14 BEAM and auto transplant
    10/14-11/14 Radiation and viral pneumonia
    2/15 Relapse
    3/15-9/15 GVD-R x 7
    10/15 Dx restrictive lung disease.
    1/16 Relapse
    2/16-9/16 Nivolumab x 8
    9/16 Relapse
    10/16-1/17 ESHAP x 3 inpatient
    1/17 Diagnosis changed from DLBC to PMBCL
    2/21/17 Bu-mide. Myeloablative allo transplant. Sibling donor 8/8
    3/9/17 Discharge on Day +16 to Hope Lodge
    3/27/17 Readmitted for croup, BK virus, acute ocular GVHD.
    4/17/17 Discharged to my home
    5/1/17 Readmitted. Dx pneumonia
    5/10/17 Discharged on 2 liters supplemental oxygen.
    8/17 Readmitted briefly for a flareup of pneumonia.
    9/27/17 Relapse. PET confirmed.
    11/1/17 First treatment of Brentuximab Vedotin. Total of 16 planned.
    1/25/18 50% tumor reduction!

  6. #6
    Senior User Chef's Avatar
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    Mar 2016
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    Jackie, wow, quite a story... long haul you've endured as well. Of course it's not ideal for anyone to have the need to be here but it's a great forum, very helpful and informative. I'm glad you've kept a positive attitude towards this whole ordeal. Your mantra is inspiring and certainly a keeper!!! I do hope that the Car-T therapy will provide the long term outcome for you and many others, if needed. Again, welcome to the forum!

    May I ask where you are being treated?

    Dx NSHL StageIIIA
    CT {groin 6.8 x 3.3 cm} abdomen nodes, enlarged spleen 2/07/16
    Bone marrow, Colonoscopy, Gastroscopy biopsies (-)
    Lung & Heart tests Good.
    Pet scan Worrisome bone marrow 3/17/16
    ABVD 6 cycles started 3/31/16
    Interm Pet (+) 5/19/16
    Stop ABVD 9/01/16
    Pet (+) 10/04/16
    Salvage GDP 10/27/16
    Misdiagnosed from Hodgkins to TCELL ALK NEG stage 4B 12/01/16
    Adcentris 12/05/16 ~ 3/07/17
    Lumbar, Tri-fusion line, G-CSF, Collection 3/17/17 ~ 3/18/17
    Auto stopped due to infections, sent home to wait 3/27/17
    Developed 12 tumors on base of skull, patho = ALK-NEG CD30 4/26/17
    Restart Adcentris 5/18/17
    MUD Allo 8/23/17
    Pet scan NED 12/01/17

    “Each morning when I awake, I experience again a supreme pleasure - that of being alive"

  7. #7
    Hi, Chef. Nice to meet you! I was (and am) being treated at PennState Hershey Medical Center in Pennsylvania. They are a university hospital with a very competent hematology/oncology department. Personally, when it comes to doctors, I think I won the lottery! At this point, Hershey doesn't offer the CAR-T cell treatment. They are working at getting the program there since it's been approved, but that takes a while. To do CAR-T, I might need to look at other medical centers on the eastern seaboard. There are a number of medical centers within 2-5 hours that will be possibilities, such as Sloan-Kettering, UPenn, Beth Israel in Boston, and Baltimore, MD.

    I was looking at your signature. Misdiagnosed for 10 months or so? That had to suck. Can you tell me a little bit about that? Was ABVD effective at all? Most of my research has been in B-cell lymphomas rather than T-cell types. And, if I'm reading it right, you had an auto and allo transplant pretty close to each other? Also, I thought I knew most of the acronyms, but a MUD allo is a new one for me. Can you explain?
    5/12 Dx at age 24 with DLBC NHL Stage 2B presenting as <10 cm tumor in left lung
    5/12-9/12 R-CHOP x 6. Followup 3 month scans
    4/14 Relapse
    6/14-7/14 R-ICE x 2 inpatient
    8/21/14 BEAM and auto transplant
    10/14-11/14 Radiation and viral pneumonia
    2/15 Relapse
    3/15-9/15 GVD-R x 7
    10/15 Dx restrictive lung disease.
    1/16 Relapse
    2/16-9/16 Nivolumab x 8
    9/16 Relapse
    10/16-1/17 ESHAP x 3 inpatient
    1/17 Diagnosis changed from DLBC to PMBCL
    2/21/17 Bu-mide. Myeloablative allo transplant. Sibling donor 8/8
    3/9/17 Discharge on Day +16 to Hope Lodge
    3/27/17 Readmitted for croup, BK virus, acute ocular GVHD.
    4/17/17 Discharged to my home
    5/1/17 Readmitted. Dx pneumonia
    5/10/17 Discharged on 2 liters supplemental oxygen.
    8/17 Readmitted briefly for a flareup of pneumonia.
    9/27/17 Relapse. PET confirmed.
    11/1/17 First treatment of Brentuximab Vedotin. Total of 16 planned.
    1/25/18 50% tumor reduction!

  8. #8
    Senior User Chef's Avatar
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    231
    Quote Originally Posted by Jackie-18 View Post
    Personally, when it comes to doctors, I think I won the lottery!
    Hello Jackie - That's good, many aren't as lucky and muddle along with whoever they get rather than advocating for themselves.

    Quote Originally Posted by Jackie-18 View Post
    There are a number of medical centers within 2-5 hours that will be possibilities, such as Sloan-Kettering, UPenn, Beth Israel in Boston, and Baltimore, MD.
    Good that you have so many options

    Quote Originally Posted by Jackie-18 View Post
    I was looking at your signature. Misdiagnosed for 10 months or so? That had to suck. Can you tell me a little bit about that?
    Was ABVD effective at all?
    Yep, essentially a year of chemo for basically nothing. There were a couple cocktails that helped in the ABVD but the GDP was BS. The ABVD kept the lymphoma symptoms at bay for a week, (I would get the chemo sickness), and then the beast would awaken for the week I was supposed to be recovering... essentially I just got worse as time went on. Finally the computer system auto recalled the pathology for another look.

    Quote Originally Posted by Jackie-18 View Post
    And, if I'm reading it right, you had an auto and allo transplant pretty close to each other?
    I'll have to fix that as I see how it's confusing. LoL. No, I went in for collection, got admitted to the floor but picked up a few bugs from my hotel stay the week prior to waiting for the bed! They sent me home to let it heal on it's own, viruses right. Meanwhile, the beast rose up again yet this time it was lumps on my head while I was off of Brentuximab. They slapped me back on brentuximab for another 3 months and gave me the choice of transplants. If I went with the auto and I relapsed within one year I would of been declared palliative. So, I just crossed my fingers and went the allo route. I had some great help along the way from some fantastic members and mods!!! Still kickin out the jams

    Quote Originally Posted by Jackie-18 View Post
    Also, I thought I knew most of the acronyms, but a MUD allo is a new one for me. Can you explain?
    Matched unrelated donor
    Dx NSHL StageIIIA
    CT {groin 6.8 x 3.3 cm} abdomen nodes, enlarged spleen 2/07/16
    Bone marrow, Colonoscopy, Gastroscopy biopsies (-)
    Lung & Heart tests Good.
    Pet scan Worrisome bone marrow 3/17/16
    ABVD 6 cycles started 3/31/16
    Interm Pet (+) 5/19/16
    Stop ABVD 9/01/16
    Pet (+) 10/04/16
    Salvage GDP 10/27/16
    Misdiagnosed from Hodgkins to TCELL ALK NEG stage 4B 12/01/16
    Adcentris 12/05/16 ~ 3/07/17
    Lumbar, Tri-fusion line, G-CSF, Collection 3/17/17 ~ 3/18/17
    Auto stopped due to infections, sent home to wait 3/27/17
    Developed 12 tumors on base of skull, patho = ALK-NEG CD30 4/26/17
    Restart Adcentris 5/18/17
    MUD Allo 8/23/17
    Pet scan NED 12/01/17

    “Each morning when I awake, I experience again a supreme pleasure - that of being alive"

  9. #9
    Jackie,

    Your story is amazing, as is your obvious resolve and determination. As you can see from my signature, I am a T-cell guy, tho we share Brentuximab as a very effective therapy. I just passed my 2 year post allo SCT date, for ALCL ALK-, the same thing Chef had I think. But I had a way easier time of it than you have had so far. But I promise, there is an other side of the rainbow here. One of our members, MaryZ, also had DLBC, and had maybe 3 SCTs, one auto, and 2 allo SCT's, the last of which was at NIH. Anyway, for a bit of inspiration and as a confidence booster, you might check out her thread.

    Otherwise, I am sure PO will check in with some more concrete advice. All I can do is say welcome here....this is an amazingly supportive and knowledgeable community, and a wonderful refuge when things go a bit sideways, as they always seem to do, now and again, anyway.

    Keep us posted. in the meantime, here is some good Karma, and a bunch of hugs as well.

    David
    66 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.
    2 yr. post SCT check up: all fine, no issues.

  10. #10
    Newbie Regular User
    Join Date
    Mar 2018
    Posts
    21
    Hi Jackie,

    It took me a while, but I found a post you wrote to write back to you. I can not find the post where we were writing on before? You told me your whole story & I told you I'd have to re-read it to respond back some more? For some reason, I haven't been getting notifications that I have a response waiting? Hmmm?

    Anyway, I just had to write to you again before you go to Dana Farber on Monday. You have had so much treatment, both an auto and allo transplants, side effects (even pneumonia more than once!), relapses, etc., etc., yet you keep your positive attitude! You are an inspiration to us all! Keep it up and good luck Monday (I will keep you in my prayers, young lady) and your future treatments.

    Prayers and hugs,

    Teacher Deb
    Stage 1 Diffuse Large B-Cell Lymphoma Sept. 2015
    Treated with: R-Chop Oct. 27, 2015, Nov. 17, 2015 & Dec. 8, 2015 &
    15 Radiation Treatments Jan. 2016
    Pet Scan Jan. 2016 demonstrated Complete Response/Remission!
    2 months shy of two years later, a routine physical found my Lymphoma had come back; my Left Inguinal Lymph Nodes were swollen in July 2017. There were three affected this time; surgeon removed the two largest ones.
    Excisional Biopsy revealed Recurrent Large B-Cell Lymphoma on July 27, 2017
    Treated again with: R-Chop Aug. 15, 2017, Sept. 5, 2017, & Oct. 2, 2017 (had to wait a week for counts to rise)
    Pet Scan Oct. 20, 2017 demonstrated I was again in Complete Remission!
    High Dose Chemotherapy with BEAM Dec. 27, 2017-Jan. 1, 2018
    Autologous Stem Cell Transplant Jan. 2 & 3, 2018
    Pet Scan March 8, 2018
    demonstrated I was still in Complete Remission!

 

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