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Thread: Double Cancer

  1. #1
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    Double Cancer

    I was diagnosed with cancer back in August. At first, through a work annual health check, they found a shadow on my left lung. It was just an X-ray but it was big enough for them to see.I was moved to a bigger hospital and they took more scans, X-rays, pet scans, enhanced scans and an MRI. I had tumors in both lungs. The left was the biggest and had spread to my lymph nodes on that side of my chest. The tumor on the right was very small and near my sternum on the front of my chest.They also thought there was a tumor in my colon. The next step was a colonoscopy, and a bronchoscopy biopsy of the tumor on the right and then the lymph nodes on the right. My lower colon was clean but they could not get the camera further up to explore or do a biopsy, due to inflammation. The biopsy on the right came up a false negative. They considered the right tumor and lymph nodes a set. Same cancer. They decided the best next step was to do a partial resection of my right lung and remove the very small tumor there.They could then determine if the two tumors were the same type of cancer. They kept telling me it would be better if they weren't the same cancer. I did everything the asked of me and went in to have this op a healthy woman of 55. I walked the day after the op and my friends could not believe how quickly I seemed to bounce back. I was positive and I had a positive outlook. It turned out they were different cancers. The tumor on the right was Invasive Adenocarcinoma Stage 2B. They Lyphm nodes on my left lung are Squamous cell carcinoma stage 3A.
    The next step was to do a biopsy of my left lung tumor. I am waiting for those results tomorrow. They keep telling me, my situation is difficult and we are now in the middle of November. They did another enhanced scan after the operation but before the latest biopsy, it showed nodes on the right have sprung up since the op. Nobody has done anything about the cancer or possible cancer in my colon.
    Can anybody tell me what is so difficult about my situation, please?
    Last edited by po18guy; 11-13-2018 at 11:13 AM.

  2. #2
    Super Moderator Top User Baz10's Avatar
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    Buzzie,
    Sorry I cant offer any suggestions other than Ask questions to your medical team.
    Did they offer any explanation why your colon was inflamed ?.

    i went through the same investigation procedures last year as they assumed, yes assumed I had lung cancer.
    Ct guided biopsy, Pet CT, bronchoscopy, then a Wedge secfion which turned out to be old scar tissue from a previous infection.But that’s another story.

    Nothing like sitting with the specialists and asking them to give you the whole picture in non medical speak.
    Best of luck
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  3. #3
    Super Moderator Top User po18guy's Avatar
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    Sorry to hear of this. My guess is that the two solid tumor cancers require differing treatments - treatments which may not be able to be administered simultaneously. You definitely want to obtain a second opinion from a world-class oncologist or team of oncologists.
    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. #4
    Administrator Top User lisa1962's Avatar
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    Hello Buzzie and sorry to hear of your very difficult situation. I am with the others here, a think a second opinion is in order due to the complexity of your situation and the two diagnosis you have received.

    Where do you reside Buzzie, if you care to share? Your best options would be to make sure you are being seen at a comprehensive cancer treatment center, one that is well versed in the type of cancer you are dealing with. I would also insist that everything be explained to you in terms you can understand.

    We will of course do our best to help answer questions you have moving forward and offer suggestions based on our own personal experiences so please do keep us posted.

  5. #5
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    Living in Japan

    Thanks to you all for your kind words and advice. I think I should give you all some more info. I am a British woman of 55 years old living alone in Japan. The hardest part is the language barrier. My doctors speak very little English and my Japanese is the same.
    Today I am going in to get the results from the latest biopsy and to talk about their plan for the future. I am taking 2 friends in with me. One is a Japanese nurse who can speak a little English and another American friend who can speak better Japanese than I.
    I have been doing research all week on my situation but I have yet to come across any real information.My worry is, they have spent all this time since August doing test after test but apart from the surgery, I have not had anything like chemo, radiation or immune therapy to attack the cancer.
    At first, they said my cancer could be stage 4. Once they found out the cancers in my lungs were different it changed to stage 3A and 2B. Now they say it might go back up to stage 4.
    Anyway, today I hope to get more info and I might seriously think about another opinion.

  6. #6
    Super Moderator Top User po18guy's Avatar
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    Is it possible to return to Britain for treatment?

  7. #7
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    At first, they told me I could go home after surgery and start my chemo in the UK. Then they told me, I was a high risk after having surgery. I am not sure where I am at now. That is one of my top questions for today.

  8. #8
    Super Moderator Top User po18guy's Avatar
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    A good medical translator first on your list.

  9. #9
    Super Moderator Top User Baz10's Avatar
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    Buzzie,
    Depending On where you live in Japan, you have the option of speaking with the British Embassy or a consulate located in the major regional cities.

    They have Japanese language speakers and as a British citizen can offer you assistance with a interpreter and or advice.
    Or call a British Council office who all have Japanese /English staff.

    Further after extensive invasive surgery you would in any case have to declare this probably with supporting medical certificates to the airline of your choice and obtain their approval to fly.

    Generally this would be a minimum of 30 days post surgery or up go 60 days with certain surgeries supported by a medical declaration on your fitness to fly.
    Either way you would be facing a minimum 13 hour flight time and having done a 7 hour flight 30 days post surgery I can tell you it wasn’t pleasant.

    Good luck and please let us know how you get on.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  10. #10
    Newbie New User
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    Nov 2018
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    4
    Dear All,
    Firstly, let me thank you for all your kind words and and advice.
    My meeting with my doctors and translating friends went well. They helped me to finally understand why my case is so difficult. My 2 different cancers need two different therapies and they can't be used at the same time.
    I have been diagnosed with stage 4 now.They do not believe they can cure me.
    The good news is, I have passed the genetic mutation test to have Immunotherapy. My doctors stressed that if I wanted to go home now, it would be the best time because I would never be in a better condition to do that.Basically they were saying, you can either go home and die there or stay here and die.
    I had a very stressful couple of days thinking about this but the decision was taken out of my hands. My family in the U.K. researched if I could receive the same treatment in the U.K. but alas they do not offer this treatment on the national health system. Also they would not give me any treatment if I returned, as I have been out of the country too long.I have not worked or paid tax to grant me the free national health system we have there.
    I am going back to my doctors on Tuesday to give them the news. They will then schedule a treatment plan for me to receive the immunotherapy. I will have to stay in the hospital for one week to check I don't have any bad side effects. After that, it should be a once every 3 weeks visit to the doctors to receive my treatment.
    I know this will be a juggling act because this therapy will attack the left tumors, it will not do anything for the right nodes that have sprung up since my operation on the right lung.I'm trying not to think about that, just positive thoughts.
    Anyway, I will let you guys know how the treatment goes and once again thanks for all your advice and help.
    From Buzzie Thinking PINK
    ( I like to say, Think Pink because although I'm not fond of the colour, it is an upbeat, cheerful colour and it rhymes with think.)

 

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