| Joined: May 2014 Posts: 56 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: May 2014 Posts: 56 | Hello I have a question? I've been looking over my husbands pathology reports I came across one ... It's from the right Oropharynx,Biopsy It says - INFILTRATING Poorly Differentiated squamous cell Carcinoma - the tumor is strongly P16 positive. It also give the sizes of the lymph nodes on another report like multiple enlarged cervical lymph nodes for example 13mm left level 2 node 16mm right level 2 node 12mm right level one node It' says no pharyngeal or laryngeal masses are present But on another I found says IMPRESSION : right parapharyngeal mass witch contains a central area of hypoattenuation ,which may be necrosis 2. Says cervical adenopathy as described I'm finding this some what difficult to understand anyone familiar with any of this .. We're at the end of week 6 tomorrow and hoping Monday when my husband sees the rads dr. He will confirm this be his last day for RADS: ...The mucus is an all day thing he can't talk with out choking or hacking up the stuff we didn't use the peg until around a week ago maybe close to 10 days ago .. He's still able to drink water by mouth but has no want for food maybe he's scared of choking he says the throat seems tight like no room for food to go down ..I do put water and formula along with home made milk shakes trough the peg
My husband use to be a big man and I mean muscle wise he was very healthy active everyday he's lost around 25-30 in the last few months his neck is terrible it's peeling it itches .. One good thing it don't burn much maybe it's where I've took extra care of it kept it clean and used really good creams I just hope it heals good with no scars
Ive rambled enough just hoping he gets back to him self again the kids and I surly miss him so much .. This must be one of the hardest C words out their or is it just the hardest most worst one I've saw either way I would not want to see on worse than this one .. Must be strong and positive to endure all this throws at ya..
Larry ... Rt tonsil / SCC.. HPV16 positive RT oropharynx tonsil) lymph nodes were 13mm left level 2 node / 16mm right level 2 node /12mm right level one node... pet scan was good except tonsil & nodes,, just got peg placed still able to eat/swallow undergoing rads) and chemo. ) 70gy rads.. 2chemo.finished rads July 8/2014 CT Scan clear on 8/12 pet scan October-2014-Clear/ left ear tube placement 12-15-2014
| | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | Galley you can go back to the doctors and ask the question. The language in those reports is not always easy for the layman to interpret. We can google the definition of words but the meaning gets lost in the context that only a medical person properly understands.
My doctors were pretty clear all the way through, no diagnosis is possible during treatment, you have to wait for everything to heal so they can do the PET 6 weeks later.
Week 6 is tough especially with a 3rd chemo around the corner. Keep the food and water going, make sure the bowels and kidneys are working regularly too. Hang in there, we are all praying for you. Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | It probably wouldn't be a bad idea to sit down with a doctor and review the pathology report until you're satisfied with your level of knowledge you want. There's not much that it is saying. It lists where all the affected lymph nodes are and what size.
If he was big before and lost 25 lbs, he will recover fine. I went from 216 down to 137. I got back up to 211 but it took about 3 years.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 |
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: May 2014 Posts: 56 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: May 2014 Posts: 56 | Yes an update David !! Thanks for asking Today we're at rads: Tuesday is the last day we're off tomorrow for the 4th! Larry has been going trough some changes with radiation! His neck hasn't been very much of a concern I've kept it clean with peroxide and saline also used the Neosporin plus pain cream: I had some really good burn aide on hand not sure the name I'm not home but the creams the doctors offer had no effect on the neck so yes Neosporin is the best for us!! The mucus has been the most discomforting for him he's not been resting very good he's up around ever hour or two hacking the mucus he sometimes sounds as tho he's choking I'm not sure if anything is out their for people who have this mucus ...I'm talking to a nurse latter she says their is something that's been around for many years that's a miracle in getting a hold on this mucus ... When I get the name from here I will post it !!! I ask Friday if Larry could have some hydration and they didn't seem to think he was in need for any so the fowling next few days I ask if we could see the dr and talk with him on getting Larry something better for his mouth since it's been giving him so much trouble the burning tongue and rawness he's filling? So as we talk to the Dr . He says we need to get you some fluids I'm thinking ok I just ask for this two days ago):Anyway we of course agree that's the best we we're able to get set up around 45 mins from home at a hospital for seven days two hours a day .. That's a really good hospital their very nice all the nurses and their bed side manners are wonderful!!! So Almost at the end here with treatments next is healing from this brutal rads!!
The pain has not been bad at all with him he's done very well with not having no pain if he does we have meds on hand he's taking formula trough the peg we just started using it two weeks ago being the mucus is so bad and the tongue is so raw... Also he says he fill swollen in his mouth gums,jaw,and throat I'm thinking this is inflammation from the radiation .... And hope it will subside after treatment ...Hope everyone is well and this finds you all in good health have a wonderful (july 4th )) I'll be with the boys doing some activity (:
Larry ... Rt tonsil / SCC.. HPV16 positive RT oropharynx tonsil) lymph nodes were 13mm left level 2 node / 16mm right level 2 node /12mm right level one node... pet scan was good except tonsil & nodes,, just got peg placed still able to eat/swallow undergoing rads) and chemo. ) 70gy rads.. 2chemo.finished rads July 8/2014 CT Scan clear on 8/12 pet scan October-2014-Clear/ left ear tube placement 12-15-2014
| | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | I'm not familiar with PEGs, is he able to have food as well as the formula? He may be able to have something that is soothing and cool in the mouth. I found rockmelon very good, it didn't have the sugar or acid of other fruits. I tried all sorts of foods when the taste was gone. I've been having weirder cravings than a pregnant woman as it returns.
A humidifier helps moisten the tongue and throat, if you're not using one already.
Its a tough road and there is a way to go yet but you are doing an amazing job! Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | Joined: May 2014 Posts: 56 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: May 2014 Posts: 56 | OzMojo...hello yes he's only able to have formula trough the peg I also make home made shakes and put trough the peg... He's very raw in the back of the mouth "I'm sure it's from both the rads and the mucus" and hocking sorry couldn't think of another word!! And yes we're also using a humidifier it's helped a lot !! Maybe when the swelling and taste come back we can try the melon !! Like you said it's a tough road and has been for him the last two weeks prior to that he was doing fine with little side effects to treatment. I hope the next few weeks go by smooth for him he's been trough so much!!
Today at radiation a lady came in with her husband first time he was getting his mask made I thought how our first day felt we talked as we sit and waited she said her husband had tongue cancer and she started to cry i too felt like crying with her bought that time my husband came out i give her a Hug and told her I would be praying I also told her about this forum it's such a hard road for all involved in this disease and treatment ... I fill so bad thinking one would have to go this road alone with no caregiver they would have to be a strong person and I know several have and did a great job !!
Larry ... Rt tonsil / SCC.. HPV16 positive RT oropharynx tonsil) lymph nodes were 13mm left level 2 node / 16mm right level 2 node /12mm right level one node... pet scan was good except tonsil & nodes,, just got peg placed still able to eat/swallow undergoing rads) and chemo. ) 70gy rads.. 2chemo.finished rads July 8/2014 CT Scan clear on 8/12 pet scan October-2014-Clear/ left ear tube placement 12-15-2014
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Galley,
A HUGE CONGRATS on nearing the end of rad, a milestone for sure BUT the healing doesn't begin yet, in fact I'm sure we've told you the worst is probably yet to come over the next 2 to 3 weeks. Just saying this so neither of you will be disappointed if he doesn't start to feel better for a while.
You were right to get that fluid in him especially at the end of rads and going into a long weekend. Seems like everytime I needed fluids it was on a weekend and I ended having to go to a local ER whose personnel didn't have a clue about what I was going thru. I personally think EVERY SINGLE H & N patient getting concurrent chemo/rads should have a port installed pre TX and get weekly fluids. No brainer to me.
Great that you feel like helping others with your acquired knowledge. That's one reason this valuable site was started.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: May 2014 Posts: 56 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: May 2014 Posts: 56 | I Agree 100% David anyone going trough H&N chemo/Rads should push for fluids weekly they really help and I'm glad it was mentioned on here or I might not have thought to ask for it .. Today was the last day for the 7day fluids next week two days to go!! I'm dreading the next few weeks and then their is a part that's so ready to get him back to filling better than before all this started and to hear h talk again would be great I use to complain cause he talk so much ( I sure miss that ) now I would luv to hear him chatter away !!
Larry ... Rt tonsil / SCC.. HPV16 positive RT oropharynx tonsil) lymph nodes were 13mm left level 2 node / 16mm right level 2 node /12mm right level one node... pet scan was good except tonsil & nodes,, just got peg placed still able to eat/swallow undergoing rads) and chemo. ) 70gy rads.. 2chemo.finished rads July 8/2014 CT Scan clear on 8/12 pet scan October-2014-Clear/ left ear tube placement 12-15-2014
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