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Side effects
I was diagnosed with stage 4 tonsil that had spread to lymph nodes on the right side of my neck. I had 7weeks of Chemo/radiation and have been NED for the last year. so far my taste buds have not returned, neck spasms even after 3 months of physical therapy with shoulder pain for some reason and since this all happened…
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So, Peg and I finalized our divorce today...
She fed me well while I was down and out for several weeks but she really started to become a pain at the end. Insisting that I change her dress every day and having to clean around her all the time was becoming a chore. I told her weeks ago that I didn't need her to feed me anymore and I could feed myself, and I frankly…
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"Phantom" Pain (paraesthesia) in tongue flap - LOL - FRANKENFLAP!!
Am I the only one who experiences this phenomenon in the tongue flap? I've had it ever since surgery. It isn't usually 'terrible' pain. More tingles, and the sensation that the flap is moving, when it isn't. My flap has no innervation, it's "insensible" - so this is strictly a 'brain' thing, the same phenomenon as phantom…
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Bell Ringer
Hubby rang the bell yesterday! We are home now. He asked me to ask you all how long it will be before he starts to feel a little better? He did 9 rounds of chemo and 33 rx. Hope you all have a great weekend.
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Post treatment PET scan
I just had my post pet, my Dr. Called and told me it was clean NED. Now I get to have the PEG removed next week. my treatment was for SCC BOT, involving 2 lymph nodes. I had 35 rads and 3 Cisplatin chemo. thanks to all for the well wishes and prayers. Mike
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mucositis - worried and fed up
Hi there,, Its been 7 weeks since my treatment. I am suffering from mucositis. My tongue seems swollen at back, have seen white dots come and go. My mouth is sore. It seems most foods are stinging my mouth so its difficult to find foods to eat. I still have my peg and drs have given me another 3 weeks to see if Im eating…
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Bad week
Can't remember if I posted that my mom doesn't have to have part of lung removed. They think they can remove the inch and half benign tumor with a laser through broncial tube. That was great news and an answer to prayer. The rest of the week was pretty emotional. I guess I took a few steps backward thinking about Jim's…
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Another needle biopsy tomorrow LOL
This is the lump that's adhered to my trachea. The lump that was a clip. Then it wasn't a clip. Then it was biopsied and 'acellular'. Then that was inconclusive. Then it adhered down to my trachea. Then it grew. This is a poem. I'm in a silly mood today. This is the third lump/biopsy since April. I'm done being morose…
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Finished treatment almost 3 weeks - follow ups
I had stage 3 squamous cell carcinoma base of tongue metastasized to lymph, 40 rads, 1/2 way through, cancer 90% gone according to pet scan. Unfortunately, the side effects hit worse than ever a week after treatment and my son brought home a cold last week and now stomach bug. I've maintained weight, stay hydrated. I'm…
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PEG Issue
Hello all, I hope everyone doing as well as they can be. I was wondering how long this PEG tube should hurt? Well not really hurt but be aggrevating. It has some leakage around it yet, is that normal? I had it put in on the 9th of this month and saw the Doc that put it in on Tuesday of this week. I thought it was too tight…
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unable to swallow
one year after 36 rads and 5 chemos i went in for a radical neck disection and have not been able to sawllow sence is there anyone that has had that problem? Thanks Mike
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*Artificial Saliva Product Review*
Hi Gang I've done quite a comprehensive review of several artificial saliva products - tried and tested them over the last few months. I've sent it to my cancer nurses at the hospital, and it's going to the support group I'm in. Would you like me to post it here? It wouldn't be advertising of course... just someone that's…
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Lump below chin
I just about 8 months post treatment of NPC (stage 3). I have done 35 X of radiation and 7X of chemo (Cisplastin). My CT scan was 3 months ago and my ENT doctor said it was no problem. Recently, I found a small lump (I guess < 1cm) below my chin. Before the treatment, there were 2 lumps at my neck but all gone after the…
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Cannot breath lying down and radiation is to begin
Hi all, My simulation is Wednesday but you know 3 days is too long to wait for my questions. I'm hoping someone here has experienced this first hand and can lend some support. I am absolutely terriefied that my radiation treatments will have to be postponed because when I lay down on my back I cannot breath through my…
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Life after cancer
This may be the time i am hitting the brick wall although treatment may be over, i just feel i cannot put the cancer to the back of your mind and park it there. It still overwhelms my thoughts and interferes with my day-to-day living. However, i have managed to reach to a point that i have made peace with god. If he deems…
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Throat Cyst Removal Recovery Question
Hi so I had surgery where my ENT removed a cyst at the base of my tounge. He told me I should feel no pain but 5 days later every time I swallow I feel stabbing knife sharp pain where the cyst used to be. I'm a little concerned because he said it's not cancer and I'm concerned because he sent it in for pathology test…
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Weirdest side effects after NPC treatments
After my npc treatment, i am having these strange side effects and wondering if anyone experiencing the same, such as, one side of my **** frequntly start to ace during the night, the bottom half of my mouth and lips/chin is numb, i cant touch my hair because it will hurt my head. Is these normal side effects? Even my…
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Cetuximab
Hi all, Today I met with my chemo oncologist and he wants me in the clinical trial for Cetuximab rather than give me Cisplatin. He explained that Cetuximab is given one week prior to my radiation treatment, during the 7 weeks of prescribed radiation and then for one week following radiation. I will not receive a port for…
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My aching back...help, I need sleep!!
Oh my goodness...my back! I have to sleep propped up on at least 2 pillows. My face is STILL heavy a year and a half later. Plus, the gunk that builds up in my throat at night doesn't help either. If I lay any flatter than 2 pillows, I wake up choking and have to drink, rinse and spit several times. Propping up helps with…
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Jim's birthday coming up and more good news for mom
Jim's birthday will be here Sunday. Not sure how this will effect me. I thought 4th would benothing because we really didn't do much on that holiday, but it was very hard. The most we did for Jim's birthday was have a nice dinner out but maybe that will be hard too. I have an appointment tomorrow with the grief councelor…
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PET Results
PET results show no sign of cancer!!!!! Inflammation in cheek from infected titanium still seen. Next PET in 2-3 months. Wonder what BCBS will say to that...... Ended up in hospital at Mayo Tuesday night. They thought possibly cellulitus had seeded to blood stream. ER doc said it would be a shame to survive cancer 3 times…
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Monthly check up
had monthly checkup today....alls well on the throat and neck, after next month I shall be on every 2 months so that's progress. I have a consultation with the esophigagus surgeon next month to talk over my blockage. My biopsy on my lip shows abnormal pre-cancerous cells have to see surgeon next month on that. I can't wait…
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Chest scan upcoming Update 9/16/2014
A lot of you know that a couple of years ago a small nodule was found in my left lung, it turned out be cancerous. It was found whilst have a nuclear stress test. Was really small, I showed the oncologist the scan and he said we could do a biopsy if it got larger, over the next three months it did increase in size. I chose…
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Neck Spasms
Hey All, I'm new to the site and would like to say hello to all of you first. I came here for this subject specifically in search for some new ideas on pain relief and treatment. I'm 5 years out from radiation and although happy to have survived I am never happy with the quality of life I'm left with. Since completing 7…
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I need help with my next fear in this process
Hello all, I need help with this. My simulation for radiation is scheduled for the 24th. I'm just recovering from left tonsillectomy and neck dissection. When I woke up in recovery from these surgeries I felt like I was being choked. I couldn't get the air into my lungs. As I'm sure many of you can relate, this is a…
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How long from the end of tx until you went back to work?
I finished my treatments on Aug. 20 and am looking to be back at work by Sept. 29 hopefully. My energy level is getting much better, taste still sucks but I can work around that, the peg comes out this week, haven't used it for two weeks. I just don't want to work for two weeks and then my energy levels crash, that's my…
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Taste: As mad as a box of frogs
Anyone else experienced this? Interested in whether it's possible for things to settle down? (Surgery Dec 2013, Radio finished 21.03.14). I remember saying to my nurse that, despite being quite unlucky with Grade 4 mucositis, after my hemiglossectomy and radio, that even though I now have a gobfull of scar tissue and…
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Ok I am a whimp!
Been off for a few days with pain from this PEG they put in. Is this normal? I am having spasms that run into my back, from around my rib cage. I am not on any pain meds. Only tylenol. They put it in on Tuesday afternoon and it just seems to get worse. I called the Doc office and was told he was out of the office and they…
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Checking In!!! Just passed the 2 year mark and still NED!
i see a lot of new names out there. hopefully the old ones are still out there too. other than all of the "normal" difficulties, life is good. i've gained back 20 of the 40 pounds i lost. mostly due to mass consumption of mexican food. my anxiety is through the roof but whatever. we have 4 dogs now even though 3 was my…
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The Education of Dee Dee Ricks
Got home from running around and turned on the TV instead of taking a nap. Fantastic documentary on HBO called "The Education of Dee Dee Ricks". A hedgefund professional, Dee Dee lived in a 14 million dollar apartment in NYC. She was diagnosed with Stage 2 breast cancer. This is her story and how she bonded with a black…