The Un-known Here we go Again

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depressed63
depressed63 Member Posts: 61 Member

My husband had head and neck cancer 12 years ago. He had some heavy doses of chemo and 32 rounds of radiation. He's a survivor for 12 years. Last November he broke out all over his body except his head. Not to long after, his feet, ankles, and hands were swelled. We went to the family doc, and he was referred to a dermatologist and a cardiologist. Dermatologist could not figure out the rash and the cardiologist said his heart was fine. He slowly started to get worse to the point he could no longer do the things he could 6 months prior. He an active 65 year old in excellent shape. He's never had breathing problems and now he's on oxygen. Especially at night when he lays down. His oxygen goes way down. When he walks and sits down it's fine. His spleen is swelled, and the lymph nodes in his groin, under his arms, and near his lungs are swelled. He had a biopsy where they removed the lymph node under his arm. The doctor said they are all swelled but we removed the largest one. I'm so nervous about the diagnosis.

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  • po18guy
    po18guy Member Posts: 1,488 Member
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    Sorry to hear this. From your description, it almost sounds like an auto-immune condition. Our immune systems, if not properly regulated, can wreak havoc in our bodies. Immune cells can attack any organ or tissue in the body, and the generalized nature of his symptoms would "seem" to fit this condition. I would think that, at this point, he is way beyond the scope of a local hospital or primary care doctor. Q: Did this coincide with any vaccination or series of vaccinations? I am fighting an adverse immune response to recent pneumonia/diptheria/tetanus vaccinations.

    In any event, since the onset of his condition seems fairly sudden and it has progressed, if he has not already, "I" would head to a major research hospital. Something to discuss with doctor.

  • depressed63
    depressed63 Member Posts: 61 Member
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    Thank you for your kind words. His does have thyroid issues. He stopped his meds for 3 months because he thought the synthroid was causing his issues. He was on a very high dose when he stopped. Now he’s on Armour. Could lack of thyroid meds have caused his lymph nodes to swell like this? The results of his biopsy should be available in a week. I’m just hoping it’s curable and once his thyroid meds are regulated.

  • po18guy
    po18guy Member Posts: 1,488 Member
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    Oh. That is a very possible explanation. He could have developed a sensitivity (immune allergic response) to current medication or potentially even withdrawal symptoms from the prior medication (thyroid or immune rebound?). I hope that he is being seen by a specialist.

  • depressed63
    depressed63 Member Posts: 61 Member
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    He has an upcoming appointment with a Hematologist/Oncologist. There are so many variations of Lymphoma. Praying that isn’t what he has and if he does, praying it’s the most curable type. We have have had some heartbreaking discussions about treatment. What he is willing and not willing to do. He’s been down that road before with head and neck cancer. I don’t blame him for not wanting to go thru with it again, but at the same time I’m hoping it’s a very curable and less invasive treatment. He had 3 strong chemos 12 years ago and 32 rounds of radiation. What is the survival rate with treatment and without it. The most difficult part is watching him suffer. Making him comfortable no matter what his decision will be is my top concern.

  • po18guy
    po18guy Member Posts: 1,488 Member
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    Hmm. Has anyone mentioned lymphoma? Enlarged nodes are 1) signs of our immune system functioning, 2) a possible immune system malfunction, or 3) potentially a sign of malignancy. Lymph nodes enlarge each and every time we have an infection, no matter how minor. In the medical profesion, when a particular physician or group of physicians have exhausted their diagnostic capabilities, they will often toss us to a hematologist. Now, that may be their protocol, which is fine, but we may not have a malignancy and this action causes much stress and anxiety. We are almost infinitely complex creatures and the variety of conditions we can experience are countless. Pre-Covid, there were 68,069 known human diseases and conditions, with perhaps many times that number simply being unknown. Yet all produce symptoms. This points out a difficulty for doctors: our bodies are capable of producing only about 150 different symptoms. This is an utter simplification, but by simple math, a single symptom can point to over 350 potential diseases or conditions. You see the complication for the doctor.

    So, they took one of his lymph nodes. That is very good, as a complete node is the best sample to produce a correct diagnosis or eliminate a particular diagnosis. Pathology results on that lymph node may either clear this up, or possibly point to the need for additional diagnostics. If the report states that it is a "reactive" node, that simply means that it is enlarged via being filled with normal lymphocytes. The question then is why are lymphocytes so elevated in number? Think of lymphocytes like soldiers in an army, and the lymph nodes and ducts (basically veins) as their barracks. Normally, they circulate around our bodies searching for evidence of bacteria, viruses or fungal infections, which are all pathogens - transmitters of disease. The lymphocyte's job is to identify and kill any of those pathogens when they detect one in their course of circulation. When an invading pathogen is encountered, they automatically send a signal and a small army of fellow lymphocytes arrives with the purpose of killing the infection.

    So, the pathology report may provide clarity here. If you would be so kind, let us know what the report states and we can go from there.

  • depressed63
    depressed63 Member Posts: 61 Member
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    Thank you. When he was in the hospital, the neck and chest scan showed possible Lymphoma. Everything else was normal on everything they tested him on. They took a lot of blood samples. Ruled out everything. His blood white and red blood cells were nothing crazy. A hematologist/oncologist seen him in the hospital. Told him about his swollen spleen, and he could feel swollen nodes near his arm pit and his groin. He was on a large dose of Lasix in the hospital and I think that's what helped reduce a lot of the swelling. 10 lbs. in 3 days. It helped his coughing as well. Now his coughing is non stop at night when he lays down. He can't sleep. We're using a wedge with a pillow on top so he's in a semi upright position. It helped for 4 or 5 days with the coughing but now the coughing is back. His dosage of Lasix was 60 intravenously twice a day and now he's only taking 20 once a day. If he doesn't get relief soon, back to the ER or I should definitely call the hematologist/radiologist to see if they can suggest something . He's exhausted. When he sits straight up, no coughing. He's tried sleeping completely upright but not for more than 30 minutes at a time.

  • po18guy
    po18guy Member Posts: 1,488 Member
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    Certainly some attention is required, and soon. I must say that the splenic involvement may change things. Some lymphomas trigger the immune system and produce autoimmune symptoms. I had one such, and coughing was incessant - but that is only my case. I am certain that you will begin to agitate regarding the pathology report, as it may well make or break the diagnosis. Men are not always the best that...;-)

    Yet, lymphoma - all types - are treatable at all stages. My first diagnosis was stage IV with "innumerable" tumors. That was 2008. My advice is to keep the heat up so that the medical machine will work in his favor.

  • ShadyGuy
    ShadyGuy Member Posts: 913 Member
    edited September 2023 #9
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    I am curious about what specific cancer he had with the “head and neck cancer”. It seems to me that a recurrence of that disease is more likely than lymphoma. Edema (fluid retention) and swollen lymph nodes are common to most forms of late stage cancer, not just lymphoma. The biopsy he had should tell you whether he has lymphoma or something else. I certainly wish the both of you the best in dealing with this. Please get an expert (specialist) involved once you know exactly what you are dealing with.

  • depressed63
    depressed63 Member Posts: 61 Member
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    His diagnosis is what the hematologist/oncologist suspected. Our consultation is in one weak with the doctor. He has put in order's for a bone marrow biopsy and a PET scan. Is there certain types of Lymphoma's that require a bone marrow biopsy for staging or is this done for all Lymphoma's? Feeling very sad right now.

  • depressed63
    depressed63 Member Posts: 61 Member
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    He had cancer in his tonsils, stage 4A I believe. He still has his tonsils. They never took them out.

  • ShadyGuy
    ShadyGuy Member Posts: 913 Member
    edited September 2023 #12
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    Sorry to hear that. Most lymphomas require a BMB to determine staging. For example my marrow was 26% cancer cells meaning stage 4. Here I am 12 years later. Lymphoma is very treatable and responds well to therapy which most likely will NOT include radiation. This is true regardless of the stage. He will feel much better after the first treament. No one wants cancer but given a choice lymphoma is one of the most treatable cancers a person can have. Please let us know what type lymphoma and the planned treatment. Someone on here will have had that therapy and can offer tips on dealing with it. As per the BMB I have had several and though not pleasant its over in just a couple of minutes. Good luck.

  • depressed63
    depressed63 Member Posts: 61 Member
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    Thank you, I feel a bit better after reading your post. I know I'll have lot's of questions. I'm thankful the hematologist/oncologist is getting things started quickly.

  • depressed63
    depressed63 Member Posts: 61 Member
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    We had our consultation today and my heart is aching. Husband has been diagnosed with one of the rare and worst Lymphoma's and it is very aggressive (AITL). He get's a pet scan next week and a bone marrow biopsy tomorrow. I am at lost for words and very scared. If there is anyone out there that knows anything about this type, please tell me there is hope.

  • po18guy
    po18guy Member Posts: 1,488 Member
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    So sorry to hear this. I had AITL at least twice it appears. He needs a T-Cell Lymphoma specialist, as very few hematologists have dealt with it and virtually zero oncologists. Here is a link to a partial listing of T-Cell specialists.

    In any event, I strongly urge him to consult at a National Cancer Institute designated Comprehensive Cancer Center. The closest such facility may be found here: https://www.cancer.gov/research/infrastructure/cancer-centers/find

  • depressed63
    depressed63 Member Posts: 61 Member
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    Thank you. There are no T-cell center's in the state I'm in and the closest Comprehensive Cancer Center to us looks like it's in Columbus, OH. We live near Dayton, OH.

  • po18guy
    po18guy Member Posts: 1,488 Member
    edited October 2023 #17
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    Make the drive! Had I not gone to such a center (2 hours round trip hundreds of times) I would not be alive. Probably would not have survived 2009. There have been many advancements in treating AITL, but it remains a challenge. The route which offers the most hope is to bombard it into submission, then perform an autologous (his own cells) stem cell transplant - in first remission. Meanwhile, search out success stories and grow your knowledge base - both will help immensely. Here are a few good links:

    https://www.tcllfoundation.org/service/for-patients/subtypes-/angioimmunoblastic-t-cell-lymphoma

    https://www.lls.org/sites/default/files/2021-05/FS25_PTCL_1_21.pdf

  • depressed63
    depressed63 Member Posts: 61 Member
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    Thank you. We have info on a trial called "Protocol A051902". CHOP+Etoposide plus Duvelisib, Arm A0 Duvelisib+CHO(E)P. Not sure if I spelled that right. Has anyone had Duvelisib before? I've heard of CHOP. He's getting weaker and weaker. I don't even know if he can participate in a trial if it's not quick. He get's a blood transfusion next week. This disease is brutal. He's went from hiking, biking, gardening, and the type of man who can not hold still 3 months ago to not even being able to walk very far and on oxygen. PET and PORT next week. Waiting on Bone marrow results.

  • po18guy
    po18guy Member Posts: 1,488 Member
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    I had CHOEP as induction therapy. It was followed by GVD (Gemcitabine, Vinorelbine and Doxil). The addition of Duvelisib is interesting. Clinical trial is officially the suggested first line of therapy, since T-Cell Lymphomas have no defined treatment - only customary adaptations of B-Cell Lymphoma regimens. They usually require that a patient undergo standard therapy and fail it before entering a trial, but it appears that things have changed. CHOEP is not an easy regimen, but neither is it easy on the lymphoma. Since Lymphoma is a "liquid" cancer, it tends to melt away fairly rapidly when the chemo hits it. Let us know how it goes!

  • depressed63
    depressed63 Member Posts: 61 Member
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    Thank you for the info. I'm not even sure how the trial works. He may get the standard before the trial begins but they list on the drugs used day by day. I'll let you know how everything goes.

  • po18guy
    po18guy Member Posts: 1,488 Member
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    There are many trials open in cases of T-Cell Lymphomas, but only a few may apply to your husband, based in the molecular makeup of his particular sub-type. Worldwide, there are 2,365 T-Cell Lymphoma studies listed, but that number includes those which are completed or have been cancelled.

    https://www.clinicaltrials.gov/search?cond=t%20cell%20lymphoma