A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Page 1 of 7 123 ... LastLast
Results 1 to 10 of 70

Thread: Diagnosed today (11-17-2017)

  1. #1
    Experienced User
    Join Date
    Nov 2017
    Posts
    75

    Diagnosed today (11-17-2017)

    Hello everyone, hope you are all well.

    Posting here to try to get some support as i much prefer personal experiences than google itself ( scares me every time i go there ).

    After suspecting breast cancer my wife was diagnosed today with DLBCL ( on the breast If i understood correctly ).

    My wife is 36 years old and late September we felt a lump ( that we thought it was due to breastfeeding - 9 months baby ). We initially (early October ) went to breast clinic and a after a painful (due to the waiting ) weeks in where the biopsy sample had to be sent to a 2nd pathologist we got confirmation last Friday that it would lymphoma and today ( 17 November ) an appointment with the haematology confirmed it was Diffuse Large B Cell. Cant find many cases of lymphoma on the breast.....too scared to look for information.

    From what i was told Lymphoma in the breast is not very common and after a few session of R-CHOP my wife will have to be admitted to have a different drug to attack any possible spread to the brain - that is scaring me a lot!!!!

    We are currently living in the UK, but had plans to return back home ( Portugal ) early 2018 so for now our plans were delayed.

    We were wondering how advisable would be to delay treatment to only start in a few months in Portugal....or is NHS much better than moving abroad ?
    Has anyone moved country after receiving treatment ?

    Thank you.

    Regards,
    J
    Last edited by po18guy; 09-30-2018 at 09:41 PM.

  2. #2
    Senior User
    Join Date
    Mar 2017
    Posts
    214
    Hello Jotey,

    Sorry for your concern, but welcome to the forum.

    Primary Breast Lymphoma is not the most frequent localization, but DLBCL is well-known, and usually responds well to treatment, with a very good chance for your wife to be cured - so that's reassuring.
    The methotrexate is a preventive measure, as there seems to be a higher likelihood of central nervous system involvement in this and some other localizations.
    Can't discuss the compared merits of the NHS versus Portuguese healthcare system, but my guess is that DLBCL, being an "aggressive" (i.e., fast-growing) lymphoma, cannot really wait for treatment. However, this is a question for your wife's current hematologist. The hospital staff can also probably answer your questions regarding the implications of your move from Britain to Portugal and the most appropriate timing.
    I am sure others will be along shortly with more advice and possible experience with moving post-treatment.
    PBL

  3. #3
    Moderator Top User
    Join Date
    Mar 2010
    Posts
    1,327
    Hi, its a bit unusual but don't think of it as breast cancer, its not, DLBC is a blood cancer and its presenting in the breast or around it?
    Rchop is the standard treatment and she will have 6 cycles at least every 3 weeks, I had 8 cycles for dlbc and mine was in the small intestine and abdomen and I finished treatment 8 years ago, I was treated by the NHS and it was outstanding.

    As its aggressive do not delay treatment, but it should not be seen as scary as the treatment starts working straight away, over the last 18 months, I have spoken to at least 2 others who have had the same presentation as your wife and they made remission at the end of treatment.

    With good planning it may be possible to transfer her care during the treatment phase, but is it worth the hassle for a couple of months, any questions just ask the are a few of us around to help and share our experiences.

    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
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,395
    Sorry to hear of this. There is lymphoma of the eye, the liver, the pancreas, even the testicles. But, none of it is eye, liver, pancreas or testicle cancer. It is lymphoma (a liquid cancer) in those locations. Lymphoma is tumors of the immune system - which flows throughout the body. So, when lymphocytes go bad, they can establish themselves as a tumor anywhere in the body.

    DLBCL is aggressive, so treatment sooner than later is better. As to Portugal, I see that America's highest rated center (MD Anderson) established a branch some years ago in Madrid. Something to thank about, even if travel is involved. Outcome is more important than travel hassles, as I found out.
    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.

  5. #5
    Dear johnr: do you have any comments you can make about how the NHS system works for permanent residents of the UK versus visitors or visa holders? If there is a large difference in the cost or availability of care, that could affect Jotey's decision to wait until returning to Portugal or Spain. I have no idea what the quality of Spanish medicine is, but if there's an MD Anderson center there, I would think that would be a no-brainer.

    Thanks for any information you can share on this,

    DMW
    05/6/16 pre-op physical for surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo, but it doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six cycles of azacitidine, 21 shots over 7 days w/ 1.5" needle into gut + below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 shots for 5 days with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows blasts 12%
    4/16/17 BMB shows CD34 16%, cycles dropped to 4 weeks
    7/20/17 Diagnosis changed to "indolent leukemia", aka MDS
    7/27/17 BMB shows CD34 17%
    8/15/17 Venclexta chemo in PILL form added Onc estimates survival time now 2 - 4 YEARS.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective
    12/4/17 Diagnosis: Uncontrolled refractory AML

  6. #6
    Moderator Top User
    Join Date
    Mar 2010
    Posts
    1,327
    Quote Originally Posted by Dead Man Walking View Post
    Dear johnr: do you have any comments you can make about how the NHS system works for permanent residents of the UK versus visitors or visa holders? If there is a large difference in the cost or availability of care, that could affect Jotey's decision to wait until returning to Portugal or Spain. I have no idea what the quality of Spanish medicine is, but if there's an MD Anderson center there, I would think that would be a no-brainer.

    Thanks for any information you can share on this,

    DMW
    As we are all still in the EU the are reciprocal arrangements so treatment as far as I know would be free, the same as if I was ill in Portugal, I know Brits who have gone through chemo in Spain, but not anyone in Portugal.
    For visitors that are not from the EU if reciprocal arrangements are not in place, then you would have to pay, however some hospitals will still treat and chase payment later and the reality is many bills go unpaid.
    UK medicine like the rest of the world very much depends on the doctor and hospital, some are outstanding and others are average or worse, if you let us know where the treatment is being offered I may be able to offer a view, or direct you to one of the better hospitals and consultants.

    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.

  7. #7
    Hi Jotey, I also had a fairly rare DLBCNHL. Mine was in the brain. I was diagnosed in Jan of 2010 and am fine now getting MRI's every six months. I'm sure just the thought that it might go to the brain is terrifying but high dose MTX and Rituxan will often take care of it. I encourage you to start treatment as soon as possible because it is aggressive. It's very aggressiveness makes treatment very effective because it is multiplying rapidly and when it is multiplying it is vulnerable at certain stages. Even if you move back I would get started to keep it from spreading. I also would counsel you to remind your wife to stay well hydrated. The kidneys have to flush out the dead cells and I found the chemo easier if I was well hydrated. ( of course you have to stay close to br) Hugs and good wishes sent.

  8. #8
    Experienced User
    Join Date
    Nov 2017
    Posts
    75
    Hello everyone and thank for your support and help.

    Just to clarify both me and my wife dont think NHS is above Portuguese health system. The reason for potential move would be mainly to be close to family that could help out with the kids.

    Given that we are now decided to start treatment here ( UK ) so we can start it as quickly as possible....will be a tough journey but hopefully with a happy end.

    @jonhr - We will be doing Chemo on Stepping Hill and the intrathecal chemo will be done at Christies.
    Not sure if best to do everything at Christies, but I think the R-CHOP is the same everywhere is starting in Stepping Hill is quicker.

    Best Regards,
    Jo

  9. #9
    Moderator Top User
    Join Date
    Mar 2010
    Posts
    1,327
    Hi, your right rchop can be given anywhere and if you are being seem by consultants at The Christie, then you are at a centre of excellence, its one of the top 5 for clinical trials in the world (if I have the right stat).

    Prof Radford is one of the best.

    Your wife will be in good hands and will get all she needs,
    any advice or sharing of experiences re rchop, just ask.

    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. #10
    Experienced User
    Join Date
    Nov 2017
    Posts
    75
    Well after meeting the Chemo staff on Tuesday morning, going for a PET-CT scan on the afternoon, having a second opinion with a Consultant at Christies, on Wednesday, my wife started chemo today ( 23 November ).
    We still don't know the PET result so still concerned about the stage of DLBC, but was really impressed on how things progressed fast this week and the help of all the health staff.

    Luckily ( if we can say that at times like these ) she tolerated quite well all the drugs, no adverse reaction was noticed, during the day, and she could take all the dosage.....sleeping now and fingers crossed she has a good night.
    We ended up taking the baby from the nursery to prevent any more bugs being brought into the house ( hopping we can have some family here to help out while im at work ).....will be long months hopping her fever does not go up.

    Bunch of pills to be taken at home. Guess this will be a constant on all cycles ?

 

Similar Threads

  1. Diagnosed with lung cancer today
    By m630 in forum Lung Cancer Forum
    Replies: 9
    Last Post: 03-02-2010, 01:15 PM
  2. Diagnosed today can anybody answer a surgical question
    By bridienme in forum Breast Cancer Forum
    Replies: 0
    Last Post: 09-29-2009, 06:53 PM
  3. Diagnosed today with a very deep Melanoma - 6.1 mm
    By caliguy in forum Melanoma and Skin Cancer Forum
    Replies: 3
    Last Post: 06-07-2008, 12:57 AM
  4. Mom diagnosed today - NSCLC
    By karibrenmom in forum Lung Cancer Forum
    Replies: 3
    Last Post: 10-27-2007, 08:21 PM
  5. Hi, new to the board; 46 and just diagnosed today
    By Charleston Cav in forum Prostate Cancer Forum
    Replies: 2
    Last Post: 01-05-2007, 11:12 PM

Posting Permissions

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