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Thread: Diagnosed today (11-17-2017)

  1. #11
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    That sounds positive, no reaction to rituximab means future treatments will be shorter and yes all the pills are the norm except the allopurinol which is only given on the first cycle for 2 weeks. What steroid dose have they put her on?
    Re stage as we have said don't worry it makes no difference, and glad you have found staff at the christie good, she will be well looked after, try to ensure she exercises every day too, it helps in many ways.

    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.

  2. #12
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    Quote Originally Posted by johnr View Post
    What steroid dose have they put her on?

    John
    Not sure...here is the list of drugs :

    Ondansetron
    Predinisoline
    Lansoprazole
    Fluconazole
    Aciclovir
    Co-trimoxacole
    Allopurinol

    First weekend was OK...just a bit/lot tired but kept her appetite and didn't felt too sick. I was busy will cleaning and the kids so she could rest a bit.
    By last night we noticed that the lump was already reducing....was not expecting it would be that fast. Lots of water being drunk at the house at the moment

    Our main concern now is avoiding any bug being brought into the house from the 6 years old daughter. We started explaining her that mother was feeling sick and would be on treatment for a while, and that she would need to be helpful and wash her hand really well.
    Concerned on how long this treatment will take..specially now that we are coming into winter....im pretty some someone in the house will have a cold/flu at some point.

    Next cycle is on the 14 December....staying quiet until then

  3. #13
    Super Moderator Top User po18guy's Avatar
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    I'm two years post-transplant and still mask and glove up when in crowded areas or around children.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.

  4. #14
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    Hi its the Prednisolone possibly little red pills each one being 5mg normally taken on a morning as early as possible to reduce the impact.

    Yes it does work that quickly so thats a good sign, re bugs its more common sense, trying to steer clear of crowds and good hygiene will probably get you through, it did me and many others I know who have been through this, some with young children like you.

    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.

  5. #15
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    Nov 2015
    Posts
    20
    Jotey,

    Iím sorry it took me so long to see this post. I was diagnosed with DLBCL that first presented in the breast also. That was in 2015. It progressed from a dime size legion in early August to golf-ball size by September. My first chemo treatment was Sept. 19, 2015. The golf ball size tumor shrunk within weeks just like they said it would. I had 6 sessions of R-Chop and 3 IV methotrexate treatments to protect the brain. I was in remission for about 5months when a routine CT showed a new lesion. Very small, but it was there.

    My oncologist quickly set me up for an autogolous SCT. My insurance wouldnít cover it at the hospital I was being treated at, so my new research began. Thanks to PO I settled on a NCI rated hospital in Wisconsin. ( thanks PO) We all have to be conscious of our insurance coverage unfortunately.

    Fast forward to 2017...I've had issues since the SCT, pneumonia twice, lung and colon issues BUT...just came home from a 2week vacation in Sicily! There is hope and quite frankly just typing this makes me realize it!

    The people on this forum have been extremely helpful and Iím grateful I found it.

    Sharon
    Female 58, Diagnosed Sept 2015 DLBCL stage 4b. Liver, breast
    #6 and final R-Chop Jan 5th, 2016.
    3rd and final IV Methotrexate Jan 19th
    Mid cycle CT showed excellent response
    PET Feb 2016 clear. remission
    JUne 2016 routine CT and PET confirmed relapse
    R-ICE July 2016
    R-ICE completed Aug 2016. PET clean after #2.
    5.8 million cells collected for the SCT Sept 6th, 2016
    BEAM starting Sept 20th, 2016
    Autogolous SCT with day 0 Sept 27th, 2016
    2-2017 Lung issues most likely caused by bendamustine
    3+ months of high dose Prednisone. - cleared up the lung issues.
    June 2017 pneumonia
    July- Sept bowel issues, lactose intolerant?
    1year mark SCT, Sept 27th, 2017
    November, 2017 A trip to Sicily
    November 2017, Pneumonia again
    December 4th, 2017 CT still clear
    3 mo. CT scan schedule continues
    March 2018 shingles ( 3 months after stopping acyclovir)
    May - Present 2018 waxing and waining numerous lung nodules - no explanation but closely being monitored

  6. #16
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    Hi Sharon,

    thank you very much for your input....this will be a long treatment so there is no need to be sorry for taking long to reply

    Looking at all your process I'm glad all is going well ( next year just book 2 weeks in Portugal - better food and beach than the Italians - but of course I cant be impartial here ).

    Im curious tough, why not having stem cells collected after first time it was clear?
    Cant we repeat r-chop id there is a relapse ?
    Also we've been told methotrexate would be on 21 days cycle but you look like you yours quite quickly or were you doing it at the same time as the r-chop ?

    My wife had a couple of days where she felt a lot tired ( 7th and 8th day ) but now she feeling good again.....guess that is why we will have 2nd cycle next week.
    Sadly ( but expected ) her hair is falling.......im sure this stage is really hard on women - any advices on how I could help her ? I already use my hair short so i might just shave my head so we would be both bold heads at home ....making more fun for our daughters

  7. #17
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    Jotey,

    Hmmm, Portugal has better food than Sicily?? I might have to think about another trip next year!

    It is my understanding that the vast majority of DLBCL patients never relapse, that is why protocol is to NOT collect stem cells until a relapse and remission is once again achieved.

    My methotrexate was 2 weeks after the 2nd, 4th and 6th R-Chop treatments. So R-chop every 3 weeks with MXT mixed in.

    I also lost my hair. I never got the hang of tying scarves, so wore baseball type hats and had 2 very nice wigs. I think that shaving your head is a great idea! Go for it!

    Fatigue was my biggest obstacle, but I’m a stubborn person and pushed through. Let your wife do a lot on her own, don’t hover to much, as hard as it may be. ��

    Sharon
    Female 58, Diagnosed Sept 2015 DLBCL stage 4b. Liver, breast
    #6 and final R-Chop Jan 5th, 2016.
    3rd and final IV Methotrexate Jan 19th
    Mid cycle CT showed excellent response
    PET Feb 2016 clear. remission
    JUne 2016 routine CT and PET confirmed relapse
    R-ICE July 2016
    R-ICE completed Aug 2016. PET clean after #2.
    5.8 million cells collected for the SCT Sept 6th, 2016
    BEAM starting Sept 20th, 2016
    Autogolous SCT with day 0 Sept 27th, 2016
    2-2017 Lung issues most likely caused by bendamustine
    3+ months of high dose Prednisone. - cleared up the lung issues.
    June 2017 pneumonia
    July- Sept bowel issues, lactose intolerant?
    1year mark SCT, Sept 27th, 2017
    November, 2017 A trip to Sicily
    November 2017, Pneumonia again
    December 4th, 2017 CT still clear
    3 mo. CT scan schedule continues
    March 2018 shingles ( 3 months after stopping acyclovir)
    May - Present 2018 waxing and waining numerous lung nodules - no explanation but closely being monitored

  8. #18
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    Nov 2017
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    Quote Originally Posted by Sal0101 View Post
    Jotey,

    Hmmm, Portugal has better food than Sicily??

    Like i said I am not impartial so might be better having an another opinion.

    So we had appointment with the Haematologist today, and although I keep reading that in the case of this disease the stage if not so important, we were stressed to get the results of the PET-CT.

    Wife was diagnosed with stage IAE but for some reason we have been referred to an Ear,Mouth,Throat consultant, because the tonsils were a bit large ( my wife suffer from Rhinitis so that might explain ).
    Also consultant want to go ahead and do Radiotherapy after 6 cycles of RCHOP + 3 cycles "brain chemo that i don't remember the name"..... this will be a loooooooonnnnng treatment .
    On the positive note consultant was happy that just by touching she fells the lump has reduced ( sadly doctor didnt had the lump size on her notes ) and has that wife has responded well to treatment - hope she can continue this path.
    2nd cycle on Thursday - bring it on!!!

    So yes in the end a mix of positive and negative new......well to be fair i think its more positive that negative.

    And schools holidays almost starting so will be nice to have the old one at home and not bringing bugs from schools .

    Thank you.

    Cheers,
    Jo

  9. #19
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    Methotrexate is the chemo you were trying to remember, a few on here have had it, the important point when getting it is to remain lying down for a good period of time, unto 3 hours otherwise headaches can become an issue

    take things a step at a time and focus on the positives

    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.

  10. #20
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    Join Date
    Nov 2017
    Posts
    71
    Thank you Johnr, that is the chemo i was missing.

    So 2nd R-CHOP yesterday and wife hair was a mess so yesterday was also the day when we shave it.
    I Love it, but im sure mentally might be the worst part of the treatment for my wife ( if not for all women ).
    Was specially hard to explain that to our 6 years old...we do hope this wont traumatize her

    Back to 2nd cycle for some reason i always thought 21 days was the period required to allow all the blood levels to get back to normal, but apparently no...my wife's whites cells were low ( for a healthy person ) but the nurse told us they were fine for someone going under this treatment.
    Is it expected to go any lower ?

    Also been thinking more on the appointment with the haematologist .... cant figure why this case being an early state why they still want to go with the Methotrexate ? I can see the point of RT as it could have some cancer on the breast tissue, but being this early is there still a change it has spread to the CNS ?
    Im happy with doing the 6 cycles of R-CHOP instead of 4 , mainly because i think if there is a relapse we cant do R-CHOP any more ( not sure if that is correct ? ) but still concerned on how long all of this will be complete

    Ending on positives....parents in law are arriving on Monday for Xmas so I'm sure some mother cuddle will do good to my wife and will make the season holidays better. Also if the 1st cycle serves as a pattern wife's worse days will be 21/22 and 23 so hopefully she will be felling better for the 24 on wards.

    Hope you are all well and have the best Christmas possible.

 

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