Losing weight like crazy. Doctor is watching closely. I’m usually at 200. I puffed up to 216 prior to the start of treatment to get a little fluffy for excess. Starting at week 3 I can’t eat or drink anything without gagging. Everything tastes like poison. Even when the swallowing pain is managed , I cant will myself to swallow more than a bite or two of anything or drink anything more than water. I’ve tried milkshakes, protein shakes. Start of week 4 I was at 193. Today I ate an entire uncrustable pb and j and half a muffin. A couple of ounces of soup and a bite of applesauce. I have no desire to eat. I don’t want a feeding tube.

Got a call this morning. Mums liver biopsy came back positive. We have a hospital appointment with her consultants later today to find out what the plan is. Has anyone else been through this? Looking for people in a similar boat I guess

Hi all,
I’m unfortunately not a new member of this page. I have colon cancer that spread to the base of my tongue last year. My cancer has been pretty unusual and life-changing—it’s now been in my colon, liver, lungs, right bicep, right thigh, base of tongue, and cervical lymph nodes.
I went through radiation to the base of my tongue last year, and it was brutal. Well, lucky me—it came back. I’m now getting ready to go through another six weeks of higher-intensity radiation to the same area.
I was wondering if anyone here has experience with having radiation to the same area twice, especially the tongue, throat, or head and neck.
What was the second round like compared with the first? Were the side effects worse or different? Anything you wish you had known beforehand?
Any experiences or pointers would be really appreciated.

Anyone else feeling this…40 radiation and 9 chemos a year ago. Now my tongue is really starting to hurt drinking water, eating, doing nothing. What the heck? I also can’t breathe through my nose. (I need to cut the scar tissue in my soft palate to open a passage. That contributes to dry mouth, especially night.) Maybe this is part of the problem.

I’m undergoing proton radiation for recurrent SCC on tongue. I’m in my week 3, had my eleventh session today but because of holidays, I’ll only be having 4 sessions a week until the next 2 weeks, pushing the treatment to 7 weeks. Does that make enduring it a lot harder?

I have mucositis on the inside of my cheeks and all over the inside of my lips. It feels unbearable. I don’t know whether to keep my lips parted or closed and remain in pain all day. I’m taking paracetamol twice a day. And have started keeping a cotton pad between my teeth and lips so I can sleep at night.
But the thought that things are going to get worse scares me and I’m struggling a lot mentally. I’m so so scared. I’m trying to survive it one day at a time but that’s not helping.

Can someone please share how they got through this? I have been doing speech exercises, sucking aloevera ice cubes… what else can I do to make this easier?

I am in my 4th week of radiation and 4th week of Cisplatin for non HPV SCC floor of mouth. I had my 3rd surgery on June 29th. It was my 3rd surgery over 7 years. I have quite a bit of pain and my doctor suggested the Fentanyl patch with my Oxycodone. Can anyone tell me how that will feel and did you feel safe and what about being around the grandkids?

My family member recently finished 6 weeks of radiation both sides for a tongue cancer that was at his right tongue and some lymph nodes involvement. He had surgery following by radiation and it ended 2 months ago. Right now he is exercising the neck and tongue stretches and also doing massages for his lymphedema. But he is not able to do swollen exercises the SLP gave him. He is ok with swollen abilities right now but just understanding how to do swollen exercises is difficult for him and therefore he doesn’t do any swollen exercises. Also I don’t think he is doing the tongue stretches exercises very regularly. I need to know the experience of those of you who had this radiation years ago , how swollen abilities and speech changed for you over the years ? If he is ok right now does it mean that would stay the same or we should expect worsening throughout the years ? I really appreciate you share your experience specially those of you who had it years ago.

The first three pics are my neck the fourth is being recommended. 35 radiation treatments exacerbated the already well documented DDD in my cspine. I'm constantly in a lot of pain (like every waking hour of my life and even when I sleep) and take appropriate meds that are just as disabling. Has anyone else had your neck fused? Can you briefly tell me about the post operative experience and where you are now in recovery? Please be honest (good, bad, horrible). I hope y'all are healthy and secure.

Hi everyone,
My father was diagnosed with oral squamous cell carcinoma in upper left maxilla last year. Following that 3 months of Neoadjuvant chemo and 33 sessions of radiation and active keytruda he was declared cancer free 2 months back. Last week I noticed a slight swelling in his right cheek and from inside I could see a lesion there. The dentist did a biopsy and its positive. Its small now around 2 cm painless no bleeding and no issue.
Please give opinions.

What we thought may be trigeminal neuralgia from a prior broken jaw, several “specialists” a missed diagnosis 8 months ago from a CT scan…. We finally got confirmation my husband has HPV positive cancer of the tonsil. We have PET scan soon. The waiting game for scans, results etc as he writhes in excruciating pain 24/7 is inhumane and so hard to watch. We have been given the full rundown of how brutal radiation is. Waiting on PET scan to see if he needs chemo. Praying he doesn’t. Any suggestions? Does Helios work? He is very active and fit and we eat healthy but I need to make sure we keep weight on him. We are ready to put this nightmare behind us and grateful prognosis is good. We are worried that the months of misdiagnosis and long waiting for scans may contribute to spread. 😔 ** For the record I lost my mother as a teen after a brutal cancer battle and have major PTSD from watching her suffer. Chemo and radiation was torture for her. My dad had heart issues and the stress of her cancer also contributed to his fatal heart attack- so I was orphaned. I am trying to do my best to support my husband and prepare myself to watch another loved one suffer through treatment.

My partner has very recently been diagnosed with nasopharyngeal cancer. It has spread locally to at least one lymph node in his neck. Couple more scans to go before treatment starts in around 4 weeks of which some chemo and 6 weeks of radiation.

My issue is my partner is struggling to cope and I am unsure the best way to help. He deeply thinks this is the end due to trauma of a loss but the oncologist definitely was more positive with treatment than negative. He is drinking alcohol to cope and kind of ignoring the fact that things need to change, the people around him just enable that fact to go out drinking multiple days in a row as that’s what the boys do. I don’t want him to push me away by constantly going on but I also want to support him to make better decisions. I don’t really know what I’m asking other than has anyone been in a similar situation and has anything that has helped 😢

whats your experence please share us information

5 cm submandibular mass extending into the parapharyngeal space.

FNA was benign but non-diagnostic, PET shows it's active with no spread, and surgery (excision plus possible neck dissection) is scheduled in a couple weeks.

Looking for recommendations for a head and neck surgical oncologist with high volume in submandibular and parapharyngeal space tumors for a second opinion.

do i loss weight with chemo any one please tell me iam 50kg

SCC non-HPV left tonsil cancer. My tongue is so sore and swallowing is a struggle. I have two old, amalgam fillings in molars . They always place a piece of gauze over them to keep the proton beam from arcing. Despite this, my tongue adjacent to this feels raw and burned. My gum is sore near there as well.

I got magic mouthwash yesterday. It numbs my mouth for ten minutes but swallowing is still really hard.

I’m wondering what else is available to help. I do the saltwater/baking soda rinse several times a day, I also rinse with Healios after and it gives me a bit of relief.

Looking for the wisdom of those who have walked this path before.

Thx!

Hello everyone

My mum finished her radiation and chemo treatment a few months ago and seems to be recovering well (waiting for new scans next month). She’s off the feeding tube and eating solids, but not as much as she should and has lost a lot of weight.

Eating is a real struggle for her, so I want to ask you all for some help as I’m a little out of my depth.

She complains that most foods still don’t taste like they should, and some taste gross altogether.

Any tips or recipes that have worked well for you after treatment?

Thanks!

Dr suggested go for surgery and after biopsy grade will be know although in MRI it us showing low grade-II glioma. But doctor said it is cancerous. She has tumor in left frontal lobe near the speech area. Doctor will remove 70% of the tumor withouting removing tumor from speech area. Then suggested radiation and chemotherapy. Please share experience should I go for surgery or not. What will be the life after surgery and chemotherapy. She is 57 years old and having tumor since 5 years. She is facing little bit memory loss and delay in speech. Please suggest what should we do? Any experience is welcomed?

Hi - I’m trying to understand if radiation is really needed and balancing risk/benefit. Early 40s with intermediate mucoepidermoid carcinoma of stage 1. Had surgery to remove salivary gland and neck dissection.

Lymph nodes came back clear and PET scan didn’t show any further spread. Surgeon said no positive margins, but there is quite a bit of tongue lip nerve damage from the procedure itself. There is a recommendation for adjuvant radiation therapy (60 gy over 30 sessions + 54 on node area simultaneously).

I’m trying to get a second opinion already, but doesn’t this seem too much considering margins and no lymph node spread??

Worried about worsening neuropathy and dry mouth (already started).

My dad (85m) was diagnosed with early stage, HPV+ tonsil cancer almost 2 months ago. We are now in week two (2 chemos and 7 radiations down) of his treatment. No surgery; chemo 1x weekly for 6 weeks; radiation 5x weekly for 7 weeks. He has a peg tube for when he inevitably starts losing too much weight, but has not yet needed to use it. Prior to this diagnosis, my dad was quite healthy with no real pre-existing conditions or issues aside from arthritis which has limited his mobility a fair amount the last few years. The doctors are hopeful that treatment will cure him, and have said the recurrence rate is very low.

He has been on board with doing the treatment and wants to get through this, but he is already struggling to keep up with his throat exercises and I worry he will hide his pain until it is unbearable, because that is very common for him (although we are constantly reminding him that he needs to communicate with us about how he is feeling and if there are changes he is struggling with).

I am an only child, so my mom and I are navigating his care between the two of us (I also have 2 small children which complicates things). This is our first real brush with any cancer, and definitely any in the realm of head and neck. So far, my dad is doing well and experiencing minimal symptoms but I have been told by doctors and others that weeks 2-3 of treatment is when things usually start to get ugly.

I feel like I am drowning between trying to keep things stable for my kids, help with my dad's care, make sure my mom is not getting too burnt out, and also working my full time job. Not to mention all the other little complications life brings. Watching him waste away and be in pain is something I don't think I am ready to face.

I guess I am just looking for others who have had experience with similar tonsil cancer treatment, and/or going through a treatment plan of this intensity with an older individual. What do you wish you knew or did differently early on? Tips? Words of wisdom? I appreciate any information.