My Husband Was Just Diagnosed With Squamous Cell Carcinoma Of The Head And Neck Stage 4

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RE: My Husband Was Just Diagnosed With Squamous Cell Carcinoma Of The Head And Neck Stage 4

by Cmel369423 on Wed Mar 14, 2018 12:30 PM

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My husbands tumor was very large as well after radiation and chemo there was a big hole in his pharynx and base of tongue was 40 percent destroyed. Doctor Eric Genden at Mt Sinai in NYC did the free flap reconstruction surgery to rebuild his damaged areas. He now has a some hat normal eating process, however cancer has resurfaced in his lungs. We are now in another battle with taxol and carpoplatin. 6 treatments every three weeks. Latest scans show improvement and no new nodules. One day at a time...that’s how we do it!! Love each day and love each other.

RE: My Husband Was Just Diagnosed With Squamous Cell Carcinoma Of The Head And Neck Stage 4

by reissens on Sun Jul 22, 2018 04:12 PM

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On Jun 12, 2013 1:28 AM Missyr70 wrote:

Hello Everyone:Just this past week my husband was diagnosed with squamous cell carcinoma of the head and neck stage 4. All the doctors are saying is,well we can give him radiation to relieve his symptoms. But we don't believe we can make this cancer go away completely and even if we could it may come back. They are not even mentioning chemotherapy or surgery. In my heart,I feel we need to get a second opinion. My husband is only 53 years old and I feel the doctors need to do everything they can to try to rid him of this.

I know you have many replies on this site...I can only tell you what has happened to me...It has been a little over 1 year since I was dx with stage 4 SCC , mine was HPV+, which is probably why I am still here and fighting this fight.  You have to believe in your team, get doctors who you want to take the treatment as far as they can...prognosis is different for all of us..mine spread to multi lymps but no mets..I had radical tonsilectomy with 33 rads/7 chemo..10 months post tx and I am still NED. I was given different percentages of survival..bottom line is get a good team and trust them.. you be there for him too..without my wife, i would not be here..you both are in my thoughts

RE: My Husband Was Just Diagnosed With Squamous Cell Carcinoma Of The Head And Neck Stage 4

by Miraculous on Fri Jul 27, 2018 04:04 PM

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Hi Everyone. I have just found your site—and am in urgent need of help! After a few months of being misdiagnosed—and after diagnosis, waiting for the surgical date, my mother seems to be having a recurrence, but the doctors do not wish to do anything—and just want to send my mother to a palliative care and/or hospice facility.... I believe even with whatever is happening, she is vital—and vibrant—and deserves the right to be tested—and treated, not just left to die—in a so-called comfort care facility.... Just to backtrack, my mother was having pain on the inside of her right check—and mouth, beginning at the end of December of last year, while my father was hospitalized, so we went, first to an Urgent Care facility, then to the Emergency Room, only to be told that my mother had an abscess—and needed to be treated with IV antibiotics immediately (by the Urgent Care doctor, who took a tongue depressor and broke open the area), while the ER doctors stated it was not an abscess, but a bitten area of the mouth, neither of which was true. We went back to the ER a few days later, during which time my mother was given a prescription of antibiotics—and we were told that the area would heal by resorted into itself, which sounded quite far-fetched. We called our dentist, who, by now, is far away as a result of a few other tragic happenings, which I will discuss later. She said to have someone look at it nearby, so we found a dentist, who referred us to an Oral Surgery practice in Suffolk County, NY as he said he would not even try to do anything unless and until a biopsy was performed.... Three days later, my mother was diagnosed with Squamous Cell Carcinoma of the buccal mucosa. We were not given the stage at that time. We wanted to get two opinions—and knew that time was of great importance, so our choices were StonyBrook Hospital on Long Island—and Memorial Sloan-Kettering in NYC. We followed through appointments with both—and kept asking for an earlier surgical date, but, as fate would have it, both facilities gave the same date, with no chance of anything sooner—April 24th. By that time, the tumor already was protruding outside of my mother’s face—and was causing significant pain.... In any case, my mother had the surgery on the set date, with grafted tissue to replace what was removed. However, the graft from leg tissue was so large and heavy, it looked as if it would never reduce in size to fit in my mother’s mouth. It was obvious to them a few days later that the graft did not take, so they brought my mother back in to observe the tissue, but did nothing as there may have been a slight chance that the graft would take.... The artery was functioning, but not the vein—and the tissue turned blue, purple and black.... Nevertheless, my mother was brought in a few days later—-within the same week, for a third surgery to replace the first graft with a new one. She got through all the surgeries—and supposedly all the cancerous tissue was removed. The plan was to possibly follow with radiation and chemo or just radiation—in about six to eight weeks when the wounds had healed. However, as my mother is elderly—and has a tendency to want to get out of bed to go to the bathroom, the hospital’s psychiatric team came to “medicate” my mother for her anxiety—in addition to her having mitts so she would not try to pull-out her trach, etc..... If the medications truly helped her so-called delirium, without deleterious side effects that would be OK. However, each one was as bad as the previous ones—and I had voiced my concerns. Unfortunately, much time was spent on this issue, which meant that the real reason my mother was at the hospital was sort-of placed on the back burner—and I kept mentioning this.... I eventually found out that my mother’s cancer is Stage IV. Fast-forward to now, my mother just finished courses of antibiotics for two abscesses, and now, it seems as if a new tumor has formed on the other side of her face, which seems to have appeared over the course of a few days. I brought it to the hospital’s attention, but they refuse to do anything because they have just given up on my mother. They just are essentially letting her die because they believe she is not a candidate for surgery—as the disease will grow back—and they do not believe she would be able to tolerate radiation/chemo. I need help, as my mother is vital, vibrant—and I know, even if by miracle, she can get through this.... Please let me know if any traditional—and or any alternative treatments have worked for anyone to cure this disease.... My mother walks around, talks, sings, but the swelling in her face and neck areas is extremely obvious. She is beginning to get a little cough—and is a little sniffly. This, most likely would not be the situation if what happened to our family prior to this did not happen. The other part of our story is also horrendous—and if our situation were not so dire, I would not even mention this second half of our story, which I know is a cause of my mother’s illness. Rather than write the whole story here, please see the National Association to Stop Guardian Abuse website at www.stopguardianabuse.org /michael-tomasino-ny and if you are so inclined, please share the link for our Go Fund Me page at www.gofundme.com /justice-for-family-being-torn-apart, as I will do whatever I need to do to save my mother’s life, and my father’s life—and our livelihood.... Thank you so much for anything anyone can do to help us in these worst days of our lives.... At the moment, our home, which is flooded was handed over to a guardian—and my mother and I had been staying at a motel because we were evicted from our apartment because the guardian for my father (who should not have been appointed in the first place) never released my mother’s funds. My father, a Korean Conflict Veteran, is in a rehab facility on a respirator—and although he is aware of my mother’s surgery, he does not know the extent of the severity of our situation. Now, the same corrupt judge has placed my mother under the auspices of the same Guardian, too, which is approximately when the hospital is deciding not to do anything to help my mother...! Even the Social Worker had betrayed my mother and me in Court.... Please help in whatever way you can.... I am all alone in this—and essentially, have nowhere to turn.... Thank you.

RE: My Husband Was Just Diagnosed With Squamous Cell Carcinoma Of The Head And Neck Stage 4

by Shirleyperez on Fri Jul 27, 2018 04:25 PM

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On Jul 27, 2018 4:04 PM Miraculous wrote:

Hi Everyone. I have just found your site—and am in urgent need of help! After a few months of being misdiagnosed—and after diagnosis, waiting for the surgical date, my mother seems to be having a recurrence, but the doctors do not wish to do anything—and just want to send my mother to a palliative care and/or hospice facility.... I believe even with whatever is happening, she is vital—and vibrant—and deserves the right to be tested—and treated, not just left to die—in a so-called comfort care facility.... Just to backtrack, my mother was having pain on the inside of her right check—and mouth, beginning at the end of December of last year, while my father was hospitalized, so we went, first to an Urgent Care facility, then to the Emergency Room, only to be told that my mother had an abscess—and needed to be treated with IV antibiotics immediately (by the Urgent Care doctor, who took a tongue depressor and broke open the area), while the ER doctors stated it was not an abscess, but a bitten area of the mouth, neither of which was true. We went back to the ER a few days later, during which time my mother was given a prescription of antibiotics—and we were told that the area would heal by resorted into itself, which sounded quite far-fetched. We called our dentist, who, by now, is far away as a result of a few other tragic happenings, which I will discuss later. She said to have someone look at it nearby, so we found a dentist, who referred us to an Oral Surgery practice in Suffolk County, NY as he said he would not even try to do anything unless and until a biopsy was performed.... Three days later, my mother was diagnosed with Squamous Cell Carcinoma of the buccal mucosa. We were not given the stage at that time. We wanted to get two opinions—and knew that time was of great importance, so our choices were StonyBrook Hospital on Long Island—and Memorial Sloan-Kettering in NYC. We followed through appointments with both—and kept asking for an earlier surgical date, but, as fate would have it, both facilities gave the same date, with no chance of anything sooner—April 24th. By that time, the tumor already was protruding outside of my mother’s face—and was causing significant pain.... In any case, my mother had the surgery on the set date, with grafted tissue to replace what was removed. However, the graft from leg tissue was so large and heavy, it looked as if it would never reduce in size to fit in my mother’s mouth. It was obvious to them a few days later that the graft did not take, so they brought my mother back in to observe the tissue, but did nothing as there may have been a slight chance that the graft would take.... The artery was functioning, but not the vein—and the tissue turned blue, purple and black.... Nevertheless, my mother was brought in a few days later—-within the same week, for a third surgery to replace the first graft with a new one. She got through all the surgeries—and supposedly all the cancerous tissue was removed. The plan was to possibly follow with radiation and chemo or just radiation—in about six to eight weeks when the wounds had healed. However, as my mother is elderly—and has a tendency to want to get out of bed to go to the bathroom, the hospital’s psychiatric team came to “medicate” my mother for her anxiety—in addition to her having mitts so she would not try to pull-out her trach, etc..... If the medications truly helped her so-called delirium, without deleterious side effects that would be OK. However, each one was as bad as the previous ones—and I had voiced my concerns. Unfortunately, much time was spent on this issue, which meant that the real reason my mother was at the hospital was sort-of placed on the back burner—and I kept mentioning this.... I eventually found out that my mother’s cancer is Stage IV. Fast-forward to now, my mother just finished courses of antibiotics for two abscesses, and now, it seems as if a new tumor has formed on the other side of her face, which seems to have appeared over the course of a few days. I brought it to the hospital’s attention, but they refuse to do anything because they have just given up on my mother. They just are essentially letting her die because they believe she is not a candidate for surgery—as the disease will grow back—and they do not believe she would be able to tolerate radiation/chemo. I need help, as my mother is vital, vibrant—and I know, even if by miracle, she can get through this.... Please let me know if any traditional—and or any alternative treatments have worked for anyone to cure this disease.... My mother walks around, talks, sings, but the swelling in her face and neck areas is extremely obvious. She is beginning to get a little cough—and is a little sniffly. This, most likely would not be the situation if what happened to our family prior to this did not happen. The other part of our story is also horrendous—and if our situation were not so dire, I would not even mention this second half of our story, which I know is a cause of my mother’s illness. Rather than write the whole story here, please see the National Association to Stop Guardian Abuse website at www.stopguardianabuse.org "" target="_blank" rel="nofollow">http://www.stopguardianabuse.org " target="_blank" rel="nofollow">www.stopguardianabuse.org /michael-tomasino-ny and if you are so inclined, please share the link for our Go Fund Me page at www.gofundme.com "" target="_blank" rel="nofollow">http://www.gofundme.com " target="_blank" rel="nofollow">www.gofundme.com /justice-for-family-being-torn-apart, as I will do whatever I need to do to save my mother’s life, and my father’s life—and our livelihood.... Thank you so much for anything anyone can do to help us in these worst days of our lives.... At the moment, our home, which is flooded was handed over to a guardian—and my mother and I had been staying at a motel because we were evicted from our apartment because the guardian for my father (who should not have been appointed in the first place) never released my mother’s funds. My father, a Korean Conflict Veteran, is in a rehab facility on a respirator—and although he is aware of my mother’s surgery, he does not know the extent of the severity of our situation. Now, the same corrupt judge has placed my mother under the auspices of the same Guardian, too, which is approximately when the hospital is deciding not to do anything to help my mother...! Even the Social Worker had betrayed my mother and me in Court.... Please help in whatever way you can.... I am all alone in this—and essentially, have nowhere to turn.... Thank you.
Do you have a lawyer?

RE: My Husband Was Just Diagnosed With Squamous Cell Carcinoma Of The Head And Neck Stage 4

by Miraculous on Fri Jul 27, 2018 05:19 PM

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Hi. I do not have an attorney, as I was told to pay $10,000 up front, or $500 an hour to be represented. However, all the family’s funds have been tied up, so absolutely none of our money is accessible. In addition, Legal Aid Attorneys and Legal Services, which would do pro bono work, do not take Article 81 Guardianship cases.... In addition, at a prior hearing, before this happened, we had retained an Elder Care attorney, who did not file the appropriate paperwork.... We are between a rock and a hard place. Just before my mother’s diagnosis, it was a miracle we were not on the street. We had survived since last April (2017) without funds, except for a tiny Social Security check—and borrowed money from friends, acquaintances and strangers.... We managed to be able to stay in a motel room, as the landlord has been kind enough to let us stay there until we can once again pay.... The situation just became more dire—with my mother’s situation—our living arrangements—and the corrupt Court’s decision.... I am trying to take whatever legal action I can—and am in the process of trying to get the media involved, as well.... Thank you.

RE: My Husband Was Just Diagnosed With Squamous Cell Carcinoma Of The Head And Neck Stage 4

by vickij on Tue Jul 31, 2018 10:08 PM

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Did they locate the tumor?  My husband was diagnosed with Head & Neck cancer in 2016 and the primary tumor was at the base of the tongue. His symptom was an enlarged lymph node and a sore throat.  It's good when they can locate the primary because then they can target the tumor and not have to radiate the entire neck area.  My husband's tumor was removed by the robot.  Brutal surgery but he was up and moving around pretty soon after surgery. He was on a feeding tube 2 1/2  weeks after surgery. The Surgeon told us after the surgery that they were pretty sure that they got all of the tumor (they took 77 lymph nodes to check and all of them were clear) but would suggest a round of radiation just to be on the safe side.  He did 30 treatments. 5 days a week for 6 weeks.  The after effects of radiation are not good, but get better day by day.  There is nothing pretty about any of it, but thank the Lord for treatment.  He is now 2 years out and doing pretty well.  I would ask about locating the primary tumor and having surgery and I would also ask about chemotherapy.  Our treatment was at Vanderbilt Hospital in Nashville, TN where they have one of the few robots for this type of surgery.  I wish you the very best.

RE: My Husband Was Just Diagnosed With Squamous Cell Carcinoma Of The Head And Neck Stage 4

by Poorman on Tue Jul 31, 2018 10:54 PM

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That is great news! Keep the faith and remember:

Be careful about what you think and say during your times of trial and tribulation. The attitude you have while in the wilderness determines how long you remain there.

RE: My Husband Was Just Diagnosed With Squamous Cell Carcinoma Of The Head And Neck Stage 4

by slousanders on Mon Aug 20, 2018 03:50 PM

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My husband had HPV positive HNSCC and just finished a trial at the Mayo Clinic in Minnesota.  You will either get the 2 week treatment or the standard 6 week treatment (which has been used for years for HPV negative HNSCC.  The reason for the trial is that studies are showing that doctors may be overtreating people who have HPV Positive.  It is worth checking it out. The Mayo Clinic is an amazing place and the care is outstanding.  If you are accepted into the trial, you are eligible to stay at the Hope Lodge free of charge during your treatment. 

RE: My Husband Was Just Diagnosed With Squamous Cell Carcinoma Of The Head And Neck Stage 4

by Proxielocks on Fri Aug 24, 2018 03:03 AM

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On Aug 20, 2018 3:50 PM slousanders wrote:

My husband had HPV positive HNSCC and just finished a trial at the Mayo Clinic in Minnesota.  You will either get the 2 week treatment or the standard 6 week treatment (which has been used for years for HPV negative HNSCC.  The reason for the trial is that studies are showing that doctors may be overtreating people who have HPV Positive.  It is worth checking it out. The Mayo Clinic is an amazing place and the care is outstanding.  If you are accepted into the trial, you are eligible to stay at the Hope Lodge free of charge during your treatment. 

Husband had the same thing. . However, I beleive they gave him to much radiation. Going from 175 pounds to 125 pounds. Teeth all breaking off. He feels NO pain because the nerves are all dead. Can't pull them because most likely they said he would get an infection and not heal So No dentures and No inplantes. This was in Feb of 2009 and he has been on a feeding tube. Very difficult for him to try and speak. His moods or up and down. Never, know from day to day what he will be. It is not normal. He went to UCSF and they were the ones that said there was nothing else that can be done.

Patty CA

RE: My Husband Was Just Diagnosed With Squamous Cell Carcinoma Of The Head And Neck Stage 4

by torehb on Sun Nov 18, 2018 03:10 AM

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hi are u still available to help ?

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