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Dreaded Erbitux
We hv not posted since our first chemo. Just so much coping going on. I will try to make a long story short. Chemo has been ok Except the evil rash coming from Erbitux ,has turned into a grade 4 . T. Has been on antibiotic for over 2 weeks. Also neupogen shots for series total of 14 shots N/V not bad,fatigue difficult at…
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Impatient and scared.
hello. I'm 36 yrs old and I was diagnosed in June with stage 4 head and neck cancer. I finished up all the treatment last week but.... I'm either in the ER or back at the Dana-Farber for IV. The pain in my throat is ridiculous. Nausea is all the time. I cannot even swallow my own spit. Way too much phlem. Why??? Does…
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No PET scan?
Hi All, I think this has come up bedfore but it's so darned hard to search this site. My husband finished his treatment (with flying colors, perhaps I will post an update) at the end of May. Since then he had an MRI which looked fine and was scheduled to have a PET at 4 months post-treatment. Like everyone else here, we…
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Update..
Hello Everyone, Wanted to check in and give you an update on Kreg. He is coming up quickly to his 1 year anniversary (when tx ended) in November. Hard to believe that it was a year ago in August that we got that dreadful news. But, life has been going well for him. He has been back to all his normal pleasures in…
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Scan tomorrow...
and you would think that with no problems encountered with the last three doctor's visits that I'd be a bit less anxious about the results. My last scan was in March and I was supremely confident that it would be clear, quite shocked to hear bad news from the RO and the subsequent referral to a specialist and a 2nd…
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Dropping a doctor
I've been seeing three doctors since my journey started in March of 2012 and wonder when or if I can drop one. I see an ENT (who originally discovered, biopsied and confirmed the diagnosis) a medical oncologist who oversaw the chemo portion of my treatments and a radiation oncologist who sent me through the 'toaster' so…
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White foam
I am almost 3 months out from treatment and suffering from dry mouth. However, in the last week I have noticed the production of small amounts of thick, white foam. I happens spontaneously when I haven't had anything to eat or drink for a while (unstimulated). I think this is the "ropey" stuff that people complain about.…
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Radiation or not?
Hello, everyone. I am a new member of this group. In July I was diagnosed with tongue cancer. I had surgery (partial glossectomy) to have the tumor removed. I then had a functional neck dissection a month later. Cancer was found in one lymph node. According to the doctors, my margins were clear and the lymph node was not…
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MEDS TO COMBAT FATIGUE
I am getting more fatigued with each treatment. My weightlifting has gone to hell in a handbag. Has anyone been prescribed anything to fend of chronic fatigue? I'm livin on 5 hour energy. Hope all my CSN buds are having a good Monday. Mike
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9 Months After Treatment for Stage 3 Left Side Tonsil Cancer with Lymphnode Involvement on Same Side
Hi Friends, I always like to post my progression so those currently in treatment will have hope of a positive outcome. I appear to still be a friend of NED! I just had a 9 month CT scan done as part of my follow up after treatment and doctor did another scope of the throat area. Doctor said that CT report shows that all is…
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A Side Effect?
Hi Everyone. My brother made a trip "home" this past weekend. It was great seeing him. He looked so much better than when I visited him a few weeks back. The whole family came over to visit with him. We also celebrated his daughter's 21st birthday. It was a great weekend; we all had a wonderful time. That's the good news.…
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Mango Snapper ~ Dinner for Two
Ahhh, the joys of Upper Tampa Bay... Fresh Mango Snapper, a generous portion of Cheese Grits, and a few cold beers; Get'em while you can... Dodged several rain cells Sunday morning, but mostly just a light drizzle off and on... Definitely worth it for a Mango Dinner... All of you suffering one way or another..., hang…
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Awaiting meeting with medical and radiation oncologists
T1N1 tongue base SCC stage III. HPV16+. S/P neck dissection and TORS base of tongue resection. 3 weeks ago. Rad/chemo recommended due to extracapsular involvement of the one lymph node. Finally got records sent to radiation oncologist in Myrtle Beach and medical oncologist in same area. Will meet with both by next Monday…
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Not Eating
I'm new here so I'm not at all sure I've placed this in the correct forum, so please forgive me. A life long friend is a throat cancer survivor now for about 6 months. She still has the feeding tube which the doctors wanted to pull 3 months ago, but because she is not eating, relying solely on 3 Ensures daily through her…
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diets and Jack
Hey everyone, I have so many concerns for people on so many levels with this one. I have been reading more and more about using alkaline diets and their proported wonders. When asked how they are gauging their PH levels they respond with (the over the counter urine sticks). Oh my ! I kind of thought this one went out with…
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Just curious-What was everyone's initial PET UPTAKE VALUE's?
I'm just curious to know what everyone's initial (beginning) PET SCAN uptake SUV values where? High-Low?
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Side affects
Side affects already 4th rad. My skin is sloughing off my tongue and inside cheeks, my neck looks like a chipmunk one side and my teeth feel coated. the mask had to be loosened a bit this morning to allow for the swelling. Tomorrow I have the op for PEG, and dental assessment, and rad. I can't eat or drink for 6 hours…
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Anyone with P-16 know their EGFR and type of SCC?
I have read my biopsy pathology report and the tumor excision and neck dissection pathology reports and cannot find any notation about the EGFR. Have read the ratio of High P16 and low EGFR is a good indicator. Also have seen nothing about the type of SCC classification basil, adeno, VCC, etc. I do not know if this is…
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Base of Tongue Symptoms
Hello, What was everyone's symptoms as far as your BOT cancer was concerned? Did anyone have tongue pain or any kind of pain with this or was it just noticed by a swollen lymph node? Any long time survivors on here? If so, which treatments did you choose? Thank you
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First day of radiation tomorrow
Hello everyone, I have been following this forum for almost two months now and have learned so much from everyone's experience. I'm a 26 year old that was diagnosed with mucoepidermoid carcinoma two months ago. The tumor was located on my hard palate and was surgically removed about a month ago. my staging was t4n0m0.…
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Which radiation treatment is best for SCC tongue base tumors and lymph nodes in neck?
Hello again, I just had my surgery 2 weeks ago as am awaiting MD recommendation for the plan of care but imagine it will possibly be rad/chemo. We have IMRT, and TOMO nearby (within 1 hour) where I live. Any experiences with TOMO or IMRT or Proton therapy? I am T-1 N-1 M-0 and HPV16 +. Newbee on this site.
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My mom finally received her treatment schedule.
Hi All: My mom finally received her treatment schedule after 2 months of the run around. She will have radiation every day and chemo once a week. They gave her three choices for inducing the chemo and she chose an injection via the vein. Also, the doctor prescribed her Zofran for nausea. He said the Enmed was too strong.…
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Massage therapy
Question: I had a neck dissection six weeks ago and was able to go home without any pain meds (I know, I've been blessed). However, I've noticed a tightening or a knot in my right shoulder and shoulder blade tension lately. Do any of you know what the thoughts are regarding massage therapy? Is it okay? I heard that it…
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extrascapular involvement on my lumph node- damn!
Finally heard back from the surgeon last night who had said following surgery the 1 lymph node that was + for SCC popped right out and was encapsulated. He did have the pathologist look carefully around it an they found extrascapular involvement so now I have to have rad/chemo for sure. Anyone else have this on the path…
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Easy, peasy. . .
After IMRT, Cyberknife was easy, peasy. 5 days, 40 minutes each time, much quieter. Meds administered after--steroid and anti-nausea. Saturday was good, I had a pedi with my sister! Sunday was not so good, headache, pain. . . I know that I will have it tomorrow or Thursday because of the steroid. Shouldn't have sores in my…
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Exercise/Healthy eating
I have been reading some posts and can't help but throw some thoughts out there about exercise. I think as cancer survivors depending on what cancer we battled determines what we are capable of accomplishing. However exercising is not for everyone. I think a healthy lifestyle is as important if not more so than exercise…
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Tongue Nerve Damage After Neck Dissection
I had robotic tonsil surgery (cancerous T3 N0 M0) and total neck dissection - removal of 131 lymph nodes (no cancer) ...since then I have Hypoglossal nerve damage - half my tongue is completely numb - when I stick out my tongue it points towards the dead - damaged side. The pain and discomfort are constant . When just…
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PET UPTAKE 2 1/2 Months after Biopsy! Cancer or not?
Hello, I had a small BOT biopsy 2 1/2 months ago and just had a PET scan that showed BOT uptake of 4.1. I have not been diagnosed with BOT, we're exploring as my doctor said. I have had pain in BOT for 8 months now and had 3 CT's, Tonsillectomy and 2 small biopsies. Should I be concerned with the 4.1 uptake. The…
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Met NED Yesterday at MDA!!!!
Friends, After getting the scan on Monday (whoa...my first!!! -- not as bad as my imagination made it!!) and then waiting on the ENT for three hours on Tuesday...he handed me the report and there he was --- NED!!! Jumped up and did a happy dance right there!! Then gave my wife a big ole sloppy kiss! So now enjoying the new…
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First day rad
My first day at rad today. I was apprehensive early this morning not knowing what to expect, that included the hospital transport. I needn't have worried, the transport turned up on time, I was the first pick up 8.30 then we picked up another head and neck patient, followed by a terminal stomach cancer patient. I was in…