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Thread: I'm a terrified and dispondant

  1. #1
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    I'm fairly dispondant

    Hello everyone,
    (Before I start I need to say I did the Google for my symptoms And I know you guys are tired of being troubled by anxious worriers like me.) I apologize if this is a jumbled mess I'm typing it out as it comes to me, because I need to get this off my chest. I'm more or less in a constant state of depression and anxiety right now, I noticed back in I think either towards the end of May or beginning of June just after my 31st birthday. I noticed swelling (not a lump it is to soft and I can push through it) around the size of a quail egg on my lymph nodes just under the left side of my jaw.(I have to expand my throat tonpush it out, because as I sit here right now and touch it with a relaxed throat I can't feel it at all. It caused a stir at first but like an idiot I ignored it, primarily because my health insurance wasn't/isn't active until after September 1st. (I work for a university).

    Fast forward to about a week ago everything is fine I don't notice anything then suddenly my salivary glands on my left side under my tongue started to seize up (again I didn't think much about it but this time I've experienced it in the past, I would massage it and it would stop, however this time the same spasming/seizing would hit two more times both times in the morning and, while in the bathroom I would flex my throat again and the swelling would be more significant and bulge out further before after a time recede and go back to it the size I discovered it and then a node appeared under my tongue on the gland I have noticed that the node has receded some although it is still there. I haven't experienced it since. And as I began my emotional downard spile I started to get hit by other things.and other symptoms seemed to appear as I started looking more in to cancer and the different types and General symptoms.

    First and this is the most prominent and consistent thing that has me thinking the worst aside from the swollen lymphnodes, I haven't had much of an appetite, like to the point I've gone down three lbs in like three days(I've been trying to lose weight anyway through diet and exercise)I've been able to keep my weight some what balanced through some force feeding I have had a couple of times where my appetite would return and I could suck down almost anything insight. But that's happened when my mood was higher. I've had sore throat s but they usually go away mostly show up from me constantly pushing band prodingnthat spot on my neck/jaw. I've had some neck tightness a couple of times but that usually goes away as well, I do get some sweating too. And those only showed up around the time I started looking up non NHL, so that's the mess going on with me right now, I have an appointment with my GP on the 26th in the afternoon, where I should get some answers what sucks is my health insurance doesn't kick in until the 1st of September after I try to figure out how to pay the $2500 deductible so I have to pay for this visit out of my own pocket. I'm sorry about all of that, it's just the chaotic state of my brain and I'm immediately assuming the worst and it's been keeping my mood down in the pits.

    Thanks for reading my wall of text this is more of a sound board for me and so I can keep my symptoms whether physical or psychological in check for when I see the doctor and in a weird way it feels better seeing them laid out.
    Last edited by FABF; 08-16-2019 at 01:21 AM. Reason: Perfectionist

  2. #2
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    Also, I owe someone the deepest apology I can give, someone who I joke with at my work (a student) we were in a friendly banter and she let it drop that she was gone for so long was because she had cancer, and I didn't register it quick enough and mitigated it like a moron... I doubt she will forgive me for my insensitivity but I do need to apologize for the ba**ard I was and tell her I'm happy she's ok.

  3. #3
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    1. Go to doctor.
    2. ASAP
    3. Ask about health anxiety.
    4. Proceed from there.
    5. Really.
    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
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    I've been a cancer patient for over 6 years. It's been my experience that after the initial shock wears off in 6 to 8 months cancer patients are less sensitive than most people think. You should hear us in the chemo room. Of course we can joke about things that "healthy" people can't. For example someone said he once worried about having enough money for retirement and now he worries that he has too much. My doctor even told me about an internet site called despair.com that makes fun of motivational posters. I almost hurt myself laughing.

    You are in a very difficult zone right now. You are wondering about everything. Health, money ,normal responsibilities. That's tough.

    I've been there. I got diagnosed in April 2013 and had a colon operation the same month. I recoverd, paid my bill and 3 months later did a 35 mile triathlon. In November, 2013 I visited an oncologist who was extremely pleased with my preliminary test results. But 2 hours later I walked in from running errands and my doctor was on the phone. That can never be good. I went from a healthy athlete to a stage 4 cancer patient in 5 months. I was also told by a young oncologist that I probably had pancreatic cancer and could be gone in less than a year. The senior doctor came in right after that and told me to reserve judgement because my case was uncertain. I learned that uncertain is not the worst thing to hear.

    To add to the health threat, my hospital hit the limit of my insurance and didn't tell me. They managed to run up a bill of $88,000 before they informed me that my insurance wouldn't pay. That's not something to dump on a chemo patient that is having a hard enough time dealing with a major health issue.

    Anyway, I got the better end of uncertainty and came through a pretty threatening time. I got a lot of prayers and encouragement from friends. I'm certainly no more deserving than anyone else but i believe that I'm still here and doing well mainly due to the grace of God. And the $88,000? Well I pay $100 a month thanks to my attorney that can be Darth Vader when needed.

    So the bottom line is I've experienced some of what you are experiencing. It may take 6 or 8 months but you'll get things sorted out. It might not be like a Hallmark movie but things will be better. I never intended to be a veteran cancer patient taking thousands of pills a year or getting 3 hours of chemo every other week. But I'm doing great. I got chemo yesterday(Wednesday). I'm a little tired now but I'll be out running a 5k with friends Monday night.

    I'm truly blessed and my prayer for you is that you will be, too. Yes, its hard for you now. There's a lot of uncertainty. However, you have a chance to not be me. If you have a problem, then maybe it can be fixed. Short of another miracle, I'm a career cancer patient but I'm ok with that. I see plenty of people who would trade places with me in a minute.

    Maybe you'll be a person i'd like to trade places with after all this is sorted out.

  5. #5
    Newbie New User
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    Aug 2019
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    Hi, I broke down and went to see a doctor an Acute care doctor, and she did a physical exam on my lymphnodes and said they check out, and a physical check of my spleen and liver aren't enlarged or anything like that, they did a cbc and they said everything looks pretty normal aside from being a bit on the dehydrated side. I have a follow up appointment with my PCP on the 26th. I'm sorry for being insensitive to everyone here with my psychosomatic worries because of the dreaded Dr. Google.

  6. #6
    Quote Originally Posted by FABF View Post
    Hi, I broke down and went to see a doctor an Acute care doctor, and she did a physical exam on my lymphnodes and said they check out, and a physical check of my spleen and liver aren't enlarged or anything like that, they did a cbc and they said everything looks pretty normal aside from being a bit on the dehydrated side. I have a follow up appointment with my PCP on the 26th. I'm sorry for being insensitive to everyone here with my psychosomatic worries because of the dreaded Dr. Google.
    Google just makes it so easy for someone to work themselves into a frenzy. 20 years ago, you would have had to pull out a copy of the Merck Manual, and even then with a 1000 page book, it had limited information.

    Now, since you searched about medical concerns with google, you'll get a constant diet of pharmaceutical and medical ads for months, as the algorithm figures you're interested
    Nov 2013 PSA 4.2 Biopsy Jan 2014- 1 core positive, 20% Gleason 6, doctor highly reco'ed robotic RP - 2nd opinion at UPMC April 2014, put on active surveillance. 2nd biopsy Feb 2015, results negative. PSA test Feb 2016, 3.5. 3rd Biopsy Feb 2016. 3 positive cores less than 5%, Gleason 6. Octotype DX done April 2016, GPS Score of 24--rated "Low risk". PSA test 8/2016, 3.2. PSA test 1/2018 2.2 (after 7 months of proscar) PSA test 7/2018 2.3, PSA test 7/2019 2.0


    DOB 1956, in Pittsburgh, USA

  7. #7
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,391
    Do jump on that anxiety! Do it without delay. You see how it ruins your peace of mind? "If" you allow it to, it will ruin the remainder of your life - jumping from worry to worry to worry...

    You deserve to live in peace.
    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.

  8. #8
    Newbie New User
    Join Date
    Aug 2019
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    5
    Hello, I have returned to this thread to confirm what Pol18guy has said, and unfortunately has said many times to many people. My doctor (whom I've seen my entire life) listened to my fears, my symptoms and my break down in his office, believes me to have Health Anxiety and so through tears I asked him about BCT and he completely agrees and set up a team next week to meet with a therapist. I just returned to first apologize for my hysterics, it wasn't fair to actual patients, caregivers and survivors who are dealing with this accursed disease I feel like I'm a monster for invading your space. Second to extend a thanks to Pol18guy your anxiety detector is on point, and a true man of(for lack of a better phrase) jaded wisdom(I'm assuming byou can tell the anxious by the walls of text that they usually post at least that's what I've gathered through reading some of the forums here in "worried". Thank you and I will now sign off so, if you so wish you can close this thread, and don't take this personally I hope to never speak to any of you again. I whole heartedly wish you good luck.

  9. #9
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    You are very kind. But - and this is crucial: You have identified the problem and have arranged for treatment. There is nothing more pleasing to hear than what you have just posted. Will it be easy? Probably not, but anything worth having in this life (especially peace of mind) is worth fighting for.

    All the best to you!

  10. #10
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    One last thing especially for any people who might be in my situation and stumble across this post, you must control your mind or it will control you, anxiety is a disease that can do alot of damage to you both physically and mentally, you must quite the devil. Take it from someone who has literally spent two weeks believing they had a something they didn't and spent almost their entire waking hours caught in the miasma because they were absorbed by the information that had them convinced they were dying even though no doctor said otherwise. Find peace for yourself you don't deserve to suffer mentally no one does. Also stay off Google please.

 

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