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Still here!
I don't post often, but I am still here to lend an ear or a shoulder to lean on!
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Missing Data Event-Check your Account-
This is to let everyone know you should sign in and click on home at the top left if you are not already there and click on "preferences and settings" in the green box lower left. Check your information is correct. I had my email address and other things just on this page that I had to reenter and click save at the bottom…
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Lost Discussions
This breakdown of the system resulting in the loss of so many conversations, helpful tips, resources, guidance, etc. is awful. i can't believe that there wasn't a solid back-up system in place to prevent something like this from occuring. It's a terrible blow to folks who are struggling with life threatening health issues…
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It's Becoming "REAL"
It's official...liver resection to happen on February 19th. Got the call and I can't explain what I'm feeling. I "knew" it would happen but it still feels like I am watching clips from a movie about someone else. But, it's ME!!!I still don't know if both colon and liver with be resected at the same time. I have a…
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CT/PET
2 1/2 months ago I fininshed treatment fir tonsil cancer with lymph node involement. 35 rads and 3 intense chemos. CT was really good. PET in 10 days....and scared to death. Is the CT predictive of PET results?
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Hate it but it's back again
sorry it's been so long, but just yesterday left my ENT office and got my results from my recent ct scans, Was told i have a recurrent from my cancer, this time it's on my base of my tongue, not many options was told to me, First option was open surgery and i was told that,that would consist of loss of tongue,…
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PET scan not covered by insurance?
Just got an EOB (explanation of benefits) yesterday for the PET scan I had in early August, the insurance company has decided it was "medically unnecessary" and isn't going to pay for it. Any of you folks run into this? In retrospect I or my rad onc should have sought preauthorization, but I admit it didn't even occur to…
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Hubby with tonsil cancer with lymph node involvement
My husband of 25 years was diagnosed with tonsil cancer withlymph nodes involved on March 8. He has had a lump on his neck for 9 months before we finally got it checked. I must say the news of this was devastating. We have since gotten in at the University of Michigan Hospital and met with the Oto, RO and dentistry. MO is…
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Interesting read
Hi, Have not posted in a while but wanted to share an article I came across that's relevant to a lot of us. The following link is to an article about a HPV vaccine that shows promise to those that have HPV. Here is a snippet from the article "vaccine is poised to combat existing infection and prevent and treat the onset of…
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Treatments
Hi, Recently l have been diagnosed with squamous cell carcinoma ( hpv virus ) I discovered a lump in my neck and sure enough it was cancer. The cancer is in 1 lymph node in my neck and their is a tumor on 1 side of my tounge at the base. The oncologist thinks that this is the primary. I am receiving 7 weeks of radiation (…
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3 Month PET= NED!!
Hello, Just thought I would send an update on my cancer journey. diagnosed in March with HPV+ HNC, right tonsil and right lymph node. Treatment was 6 weeks daily proton beam radiation at Mayo clinic. Initially insurance denied out of network proton beam rads therapy stating it was "experimental". After a written letter…
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Just venting
Sorry to be a negative nelly, but I need a place to vent, with no judgement. I am about 14 months post treatment for Scc HPV ( tonsil) . 4 months since feeding tube was removed. I lost 50 lbs at first. Another 20 after I started eating on my own. It is a stuggle to eat. Have to have water to wash down most things. My sense…
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A Must See-Short Video for Cancer Patients and Families
Please look at this video it is 17 minutes it is great for us cancer patients and supporting families and friends and it is called Lost in Transition as we transition from cancer patient to cancer survivor now you are done and they talk about how once treatment is done everybody thinks you are done with treatment,…
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I’m Back Again...
On Sunday I am going back to Dana Farber for a redo of evicting Griselda from my neck....she is a stubborn b**ch!! On the bright side...ALL the nodes in my lung have resolve....that’s right, gone like yesterday’s news. If this cyroablation on my neck works this time I will be cancer free for the first time in 3 years.…
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6 months post and still have some questions
Im 6mos post and I am still dealing with mucus and having trouble eating foods without chasing it down with water. Doctor said this is normal, and that people are different. I know when I went for my first scope he said pet scan wasn't clear to see if the tumor was gone. Once he scoped I was clean. I still wonder because…
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Bad news responses
Thanks Matt, Russ and Tommy for responding. I will try to stay positive and I agree my doctor shouldn't of alarmed me like that. He's good at his profession but can be insensitive at times. I will try to stay positive. Lost my voice too for last 3 months. Still trying to find where it went! Lol Had a marvelous singing…
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Odd Sensations at Neck...
Hi All! Trusting to find you doing well in this journey we are on with good thoughts coming your way! I have a question. Have any of you had a sensation of "being choked...or a tight band around your neck post treatment, partial neck resection, max in rads for SSS of tongue, metz leseion around jugular same side . I…
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HPV+ Tonsil cancer- Histopathology report
Hi all I hope and pray that all of you fighting cancer are doing well and will soon be healthier than ever before. I have recently been diagnosed with tonsil cancer. My recent report contains the following information. I am worried. Anybody can help me explain how serious the findings are. My next visit to my doctor is 5…
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Update - PossibLe bad news
Hi H&N Members: I just saw my ENT specialist this past Thursday. He scoped me and said two times "Oh no." Then told me that my epigoltis was too thick disclored and somewhat bloody. Said it wasn't normal. He said might be cancer, radiation, or another problem. So I have to have a biopsy on Halloween day. I know strange…
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under the tongue cancer
my significant other, who we have been together for 20 yrs has just been diagnosed with stage 1, and in a few days we go and see the surgeon.. I am terrified because Randy has liver disease and a bleeding problem to begin with... I am so scared.. Thank you for this board so i can vent and be a help to anyone here xo
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tongue cancer
anybody out there with metastatic tongue cancer? My brother has squamish cell carcenoma, primary site being the tongue. it has now spread to the lungs and other parts of the body after three years of being in remission, he originally had surgery to remove the tumor and then radiation. Now it's back, and we're looking for…
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PET Scan readings - Pre- and Post-treatment
Here are the readings from my pet scans. Kindly let me know how do you find these results. (History: Right tonsil Hpv + cancer with lymph nodes involved) Key excerpts from the report below: 1. Previously noted enlarged right cervical lymph nodes have significantly decreased in size. For reference, right level II…
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Can someone explain immunotherapy?
Hey all, in my continued quest for information for my mom, i'm trying to understand just what immunotherapy is, how it works, what it does, etc. Someone suggested we look at keytruda immunotherapy. i haven't the faintest idea what it is. We do have a consult with the medical oncologist next Tuesday and i will certainly be…
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Hello all! If you have questions about your insurance...
...I may be able to help. First, and most relevant, I have stage 4, HPV+ HNSCC. Been having a lot of fun with it, but haven’t really engaged in any forums about it. Ironically, it was a search for anything new I haven’t tried for the darned dry skin from the Erbitux that brought me here. One of the posts I saw memotioned…
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First Pet san results after treatment.
So i saw my dr today who scoped me for the swelling they suspected in petscan results yesterday. Thanks God the swelling in the voice box was due to radition effect so the dr said it is not to worry about. As for the overall results, the dr said there is an improvement of more than 90% however it was not 100% clear yet.…
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PET scan results - Swelling in Voice box
First post treatment PET Scan results came out today. They say everything looks clear and fine except some swelling in the voice box which might be due to some infection or the radition effect. But they say it must be checked up so They have called me tomorrow for check up. Anybody has this experience? Feeling worried.
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Constant fatigue
It's been 9 yrs. for me since I have dealt with radiation and chemo. However since then, I am so fatigued to this day all I want to do is sleep. I can take a dozen naps and still don't feel refreshed. Is this normal? Is anyone else going through this? If so, what can I do about it? It's making me crazy!!!
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Cancer is very smart
I had a selective neck dissection and as well as The following parts of mouth all on Right side: BOT, Tonsil, glossopharyngealand the right posterolateral pharyngeal wall, plus unexpectedly (when I was openeded up), a largish amout of cancerous cells outside the area with 0.5 cm of SO's saftey margin around the main tumor…
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Swollen and painful lymph nodes 12 weeks after treatment
Hi all. I am 12 weeks post chemoradiation. Diagnosis: scc right tonsil hpv positive cancer with right side neck lymph nodes involvement. Brief history: i had 33 rads with chemo. Treatment ended on july 6th. Right tonsil was removed before xhemo and rads. Felt a significant shrinking in nodes in the first week of rads and…
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Neuropathy WITHOUT chemo?
So it started out as Lhermitte's sign, something familiar if not common to a lot of folks on this board. But since then it's progressed to tingling in the hands and feet, primariily on the left side; peripheral neuropathy. I know that's a thing for some who have had chemo. But I didn't have chemo, I had surgery then 30…