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Thread: Waiting until my appointment is hard

  1. #1
    Newbie New User
    Join Date
    Apr 2019

    Waiting until my appointment is hard

    Maybe Iím just posting here for reassurance, maybe not.

    First of all, Iím 30 years old and I know that, in general, thatís low risk for most cancers. I also have no family history, so, I have that in my favor.

    Having said that, Iíve always been very aware of my body and its changes in general, and, this time something feels different.

    Last time I had a full check up was in 2016/2017. My last chest X-Ray being in Dec 2016. Lots of blood tests and random body ultra sounds in 2017. Last year, at some point, I had a laryngoscopy done because of sinus issues, but I donít remember exactly when.

    Anyway, since approximately Dec Iíve had a cough that doesnít go away. I didnít even notice until it was pointed out to me. Itís not like all the time, but constant and daily. About a month and a half ago, Iíve developed back pain that was different from the kind I usually have. Itís hard to explain ó it just feels different? And it doesnít go away. I also randomly get blood in my mouth ó just literally out of nowhere, blood shows up in my mouth and I have to spit a few times to get rid of it, and more recently, Iíve had a sore throat ó more like a pain in my throat, really ó but only in the left side.

    Anyway, I have an appointment with my GP on Tuesday after a long almost two-month wait, and Iím honestly nervous. Can this all be something else entirely? It probably is. Am I blowing this out of proportion? Probably. But when youíre watching Netflix and all of a sudden, blood in your mouth, itís hard not to freak out. When you think of the pain or the cough that wonít go away. Then it goes through my mind all the possibility from lung to throat to salivary glands cancer and it just sucks.

    I guess Iím more looking for someone to tell me not to worry! Thanks for listening.


    ps: I know a lot of you are dealing with actual cancers and donít need the negativity, so, Iím really sorry for this!

  2. #2
    Moderator Top User
    Join Date
    Mar 2010
    Hi Kate, sorry to see you feel the need to post, we are a community of patients, family and carers who share experiences and support people with cancer, none of us are medically trained so whilst we can listen, giving you a definitive answer is not possible. As you have stated your symptoms could be for many reasons and they have to be investigated and sometimes that means ruling things out out. Only doctors can take you down that path, therefore your appointment is important as its the first step, ensure you give a full history, share any concerns and see what they say and what the next steps may be. Sadly waiting can be a pain, but that is the way it is, so keep busy and do things that distract you so you don't dwell on it.


    please read this sticky

    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.

  3. #3
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Sorry to hear of your health situation. Honestly, those symptoms are so widely varied that no particular cancer jumps out. Having just passed through a combination of mystery viruses, I will tel you that it may very well be one of the millions - yes, millions - of viruses that are simply unknown to medical science. I had every blood panel know to medicine done and zip was the result. Try not to read too much into this, as we are in a viral world.

    I am thinking:

    1. Cough = throat issue
    2. Blood in mouth from throat issue
    3. Back pain from the repetitive and violent muscle contractions involved in chronic coughing.

    Let us know what you find 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.

  4. #4
    Newbie New User
    Join Date
    Apr 2019
    Thanks, guys!

    Iím really trying not to fret. Like po18guy said, Itís likely a throat issue (which can be caused by post nasal drip ó which Iíve had to get treatment for before), and pain in my back could be from coughing or my yoga (which is something fairly recent) or tension!

    Also, I really sympathize with getting half of your blood drawn and not knowing what is wrong with you. I was sick for almost a year only to have the diagnosis of ďundiagnosed autoimmune disorderĒ, I mean (which, by the way, can possibly cause bleeding in throat/mouth/soft tissues?). I hope they figure out whatís happening to you!

    Iíll make sure to keep you guys posted.


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