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Thread: New pain

  1. #11
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    The time they had allotted for this was 8hrs. And it only took about two minutes and a teaspoonful to get this reaction. I don't want to try it po. I got through that by the skin of my teeth. I am not taking another chance.

    To tell you the truth po I have had two surgeries performed by this doctor and after each one the Cancer returned in 3 weeks. I know it's hard for them to get everything but I would think It would take more than three weeks for a microscopic cell to grow to Tumor size. He is one of the best Head neck and throat surgeons that specialize in Cancer in the US. But he has failed me miserably. I am thinking of going to Sloan Kettering. I am calling them tomorrow.

  2. #12
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by Squamos Steve View Post
    The time they had allotted for this was 8hrs. And it only took about two minutes and a teaspoonful to get this reaction. I don't want to try it po. I got through that by the skin of my teeth. I am not taking another chance.

    To tell you the truth po I have had two surgeries performed by this doctor and after each one the Cancer returned in 3 weeks. I know it's hard for them to get everything but I would think It would take more than three weeks for a microscopic cell to grow to Tumor size. He is one of the best Head neck and throat surgeons that specialize in Cancer in the US. But he has failed me miserably. I am thinking of going to Sloan Kettering. I am calling them tomorrow.
    You got through it, though. Great idea to go to MSKCC.

    As to tumors, it all depends on a factor called the Ki67 rate: how many cells in a biopsy sample which are observed to be in the process of mitosis (division) at a given moment. If only a few, it indicates a low rate of progression. If a majority of the cells, then it indicates an aggressive form. Two years or so ago I was checked for tumors in my lymphatic system. This was done on a Tuesday, and from head to groin, nothing was palpated. Saturday of that same week, only four days later, I attended a patient education seminar conducted by my hematologist. In those four days I had developed visible, protruding tumors in my neck. When my hematologist saw them from across the room, he came over immediately and checked them.

    Somewhere on one of your biopsy reports, the pathologist should have noted the Ki67 rate.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. >50 tumors, 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. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TREC (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) Myelodysplastic Syndrome (MDS), a bone marrow cancer.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Haploidentical Allogeneic 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 Blood nose dive. Fever. Hospitalized two weeks.
    08/04/15 Engraftment official - released from hospital.
    08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), + 4 immunosuppressant drugs.

    I have been chosen to suffer, therefore, I am blessed. Knowing the redemptive value of suffering makes all the difference.

    "What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
    - Hebrews 11:1

  3. #13
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    I am still looking but the only thing I can find is a report that says biopsy confirmed recurrent malignancy. All of my biopsy's but one have been taken by a dermatologist outside of the hospital. I will look for records in the hospital data base I have access too.

  4. #14
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    This is all I could find on biopsy's. I hope it can be read as a copy and paste.
    Last edited by lisa1962; 03-02-2017 at 06:26 PM. Reason: Personal information given on an open forum

  5. #15
    Administrator Top User lisa1962's Avatar
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    Hello Steve:

    I edited your most recent response where you copied and pasted your medical chart from your online source at your doctors/hospital facility. There was things that you just may not want to put out on a forum. Things like your name, age, residence along with doctors names. etc. I just do not want a "troll" to come along, which they do on any kind of forum, seeking information that may be used for illegal gains.

    Prior to deleting, I took a look and did not see anything that can answer some of the questions PoGuy is asking. I however, would definitely take the advise PoGuy has given.

    You have been through a lot. Make sure you are getting the best care possible as your situation sounds like a complicated one.

    Keep us posted Steve.

    Lisa

  6. #16
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    OK Thank you Lisa. I didn't realize it had that much info in it.

    Well I went for the Trial Study Treatment on Tuesday. It did not go well. I had a very bad reaction to the medicine and actually now have an Adult Cardiopulmonary Resuscitation Report in my file. Yes I was dead for 13 minutes. But now I am stuck as I needed to get that medicine in me to continue my treatment. I have another appointment with the same Doctors on Tuesday morning but I have also made an appointment with another Doctor. Sloan Kettering Hospital. I need more options. This Cancer is spreading and growing fast the past 4 days. I am now getting the feeling of being pushed against a wall with no other options but to cut. And I do not like it. Today is my birthday. 67. I am still here and celebrating. I look like hell but hey who wouldn't. Hopefully the Doctors at Sloan can help me. Jefferson's staff has had 3 chances to at least give me some time. But they have failed miserably. I do not blame them for any wrong doing as I know they are doing what they think is best. It is just that their bad decisions are wearing thin with me. So lets see what a fresh group of doctors come up with.

  7. #17
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    Well I had a meeting with the Doctors yesterday. With a tear in her eye she told me there is no cure for my Cancer. They have a medicine that will give me a little more time but that's all they can do. I am going to get the medicine every 3 weeks and spend a lot of time with my family and friends. I put up a hell of a fight as it has been almost 15 years I have had this. In the end I just ran out of ammunition. I have nothing left to fight with. I have absolutely no fear of death. My family will be well taken care of. I have not done everything I would have liked to do in my life. But I have done most of it and the important things.

    So the fight is over. It is not a surrender as it will have to take me kicking and biting but go I will. Thank you all for your kind words.

  8. #18
    Administrator Top User lisa1962's Avatar
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    I am a strong advocate that that there is no “surrendering” to this disease only that treatment options have been exhausted or quality of life becomes the priority over quantity.

    I am sorry no further options are available but I can tell by your writing, you are strong minded and will make sure that whatever time you have, it will be as best as you can make it and the love of your family will provide you with strength and comfort.

    Lisa

  9. #19
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    Lisa I have been put on a Study Trial with Keystruda. I have one area that the Cancer has completely cleared. I have a large Tumor on my right cheek that was hard like a rock and Red and shiny. Now it has turned into what I can only describe as a White Wart and soft. This medicine is actually working better than any expected. As you can tell from my last post I was pretty down and things seemed hopeless. Then something like this happens. The side effects were brutal the first day. Anxiety was terrible. I had very bad shakes and it was hard to breath at times. Then I woke up on Sunday morning with the sweats and a fever. Then Diarrhea. I took Tylenol for the fever as it was only 101.3. We were ready to go to the ER in case it got higher but it went down. My wife stayed home from work that day and nursed me along keeping the fever down with Tylenol and Xanax for the Anxiety. The next couple of days we did the same. Then yesterday I got up and felt fine. If I start to get a fever I jump right on it with the Tylenol and take my meds as prescribed. I went into the bathroom this morning and looked in the mirror. This medicine is working exactly as they said it would. They say it is not a cure it will just extend my life. I read were one woman was cured by it and I think that is what we are going to see here. My Tumor is actually shrinking next to my eye and on my Cheek. The area around my ear that is effected is also showing signs of Wart like Tumors. This is the first time on years that something has actually worked for me. You are absolutely right. Never surrender.


    Steve

  10. #20
    Moderator Top User jorola's Avatar
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    Steve I have been following your thread and wanted to jump in here. You have been through so much, of course you are going to have moments. I personally believe we need to have them - kinda like a cleansing. Have your moment and then like you have just shown, get up and move on again.

    I am so happy to hear the treatment seems to be working and right before your eyes! Stay the course!

    Oh and just also wanted to add - STUPID SQUAMOUS! My hubby has non small cell squamous lung cancer so ya -hate the squamous!

    Fight the good fight!

    Jodie
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same

 

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