Hello everyone. I have been reading the posting here for weeks and decided to introduce myself.

My father was diagnosed with stage 3 SCC of the left tonsil on October 30, 2011. The mass was 2 inches long, 1 inch wide and 1 inch deep. I am his primary caregiver so I immediately jumped online to see what we were dealing with. Mom is my backup but due to a TBI, I am in charge of figuring out what to expect, how to handle it, and supervise what she does to care for dad. I'm so grateful to stumble on this site.

Dad is a 9 year prostate cancer survivor. In comparison, that was a breeze. He had his prostate removed and that was that. Dad saw an ENT because his left tonsil was bleeding for several weeks. The biopsy was done a week later. Due to dad's numerous health problems he was not a candidate for surgery to remove the tonsil. Dad suffered five strokes last year so taking him off of his blood thinners for a week before surgery was out of the question.

Dad's treatment consisted of 8 rounds of Erbitux and 35 rounds of radiation. He is currently 10 days post-treatment. His oncologist told us that this was two Erbitux treatments more than he has ever given anyone else. The Dr. told dad he hit this cancer as hard as he could and that dad had been a real trooper.

An NG tube was inserted four weeks ago. Obviously, a PEG was completely out of the question. I hate that thing. It's fallen out 3 times. Even with the tube it is a challenge to get enough food and water into dad. I refuse to hold him down and force it in against his will. He's been through so much that I have to give him that amount of dignity. Despite pushing as hard as I do, we have made a couple of trips to the ER due to dehydration.

Pain management is our biggest challenge. Dad doesn't tolerate any narcotic at any dosage. It's a family thing. I have the same curse. The tiniest doses make him incredibly ill. Normal doses quickly build in his system until he has a psychotic break and becomes violent. Yeah, we found that out after his hip replacement surgery, FUN! At this point he uses viscous Lidocain, liquid morphine used sparingly, Marinol, and Tylenol. Due to what little pain meds he does take, he is always nauseated. We have unsuccessfully tried several different meds to counter it.

We haven't reached the turning point in how he feels yet. Thanks to experiences offered by other posters here, I know we have a couple more weeks before he starts to improve. Dad's oncologist mentioned that we were at the worst part of treatment but didn't explain that he would feel worse for a couple of weeks as the drugs and radiation continue to do their job.

However, the doctors are confident that they got the cancer! They hit it hard because it was unclear if there was lymph node involvement. We won't know for sure until his PET scan in 4-6 months. He had his 70th birthday in January but I have postponed his party until he's feeling better and can enjoy it. More than likely it will be a birthday/clear PET scan party.

I also wanted to give a shout out to all the caregivers out there. You are my heroes. I work full time as well as a full time student and often suffer from feeling overwhelmed and caregiver's guilt. The dedication, patience, understanding, and love that is required to be a caregiver is staggering. The stories I have read on this forum help pick me up when I start to feel guilty or resentful (or guilty because I'm feeling resentful). Thank you for sharing your experience and wisdom.

I will see you in the forums.

Greetings Grumpy Pants!

Welcome to OCF, glad you found us, sorry you had to!

Well a big "Howdy Hello" from just across the river in Idaho! I'm soon to be a WA resident again (lived in Seattle for many years) and still spend a lot of time in the state as I just live on the border.

As far as the pain management issue goes, no narcotic is an issue through this experience, your dad is a f'n stud. I see you are using Marinol and several of us on these forums haven't had a great experience with this drug. A few have but I'll tell you I'm not a fan, especially when you're in a state that has favorable marijuana laws. I actually first used MJ for pain and nausea, among other issues, when I was being treated at the UW medical center. It should help, just vaporize or ingest, never smoke it, for me it's been fantastic for pain.

Anyways, plug into the amazing caregivers on these forums they are amazing and supporting and I'm proud to call them my friends. Best of luck to your father and to you, be sure to take care of yourself in this process too.

Keep your chin up!

Eric

Well I'm not a big MJ fan... However in this case I would advocate it! Check into it it will help make him hungry! Definitely less violent surprised they used the Erbitux, but glad they appear to have got it all - how come the were unsure about node involvement? I'm assuming he would have had a scan prior to... That's usually a good indicator, though hitting the nodes is standard treatment regardless. Welcome! And it sounds like you at a terrific care giver... Try adding some protein mix to his formula just make sure it's well blended before trying to put it through his tube - it I'll help with healing and calories! Good luck... You're almost there...

Welcome to OCF. Since your father is only 10 days out from finishing his treatments you can look forward to it only getting better and better for him. Most patients will experience a gradual improvement over the first 2 to 3 weeks post tx. Unfortunately a full recovery can take some of us up to a full 2 years post tx. Have patience very very soon your father should 'climb out of the tunnel'.

Im very sorry your father has problems with medications. Has he tried neurontin also known as Gabapentin? Im sorry but I am not familiar with which drugs are narcotics and which ones arent but I would think all the strongest ones wouldnt work for him. While I respect MJ working for some people, its not an option for everyone. It would be a very personal choice for your family to make. Your father is one tough man if he went thru all of this without adequate pain management.

Good nutrition and hydration will help get your father feeling better quickly. He needs a minimum of 48oz water and 2500 calories per day. If you can get more into him even better. High protein will help heal him quicker. I know intake right now is difficult but it is one of the most important things that can be done at this point. As a patient without pain meds, poor guy must be pretty miserable. I know I couldnt have handled it without pain meds.

Please feel free to ask questions. We will help get your dad thru this.

Thank you for the welcome.

Eric, I live right on the WA/ID/OR border so we are practically neighbors. The marinol was an experiment to see if we could increase his appetite. We are not impressed so far. Dad doesn't want to use MJ, probably because my mother would hit the roof. She was already convinced that people would break into the house to steal the marinol. I reminded her that we had waaaay better stuff laying around and easier to find then the marinol stashed in the fridge. Getting him off of the fentynal patches, hydrocodone and hydromorphone seems to help his appetite and clear his head a bit. Each day he seems to accept a little more. We finally got his water up to where it needs to be yesterday.

Cheryl, dad's PET scan came up clear for lymph node involvement except for one node. It looked funky but it was inconclusive. Thank you for the suggestion to use protein mix. I have been adding whey protein and whole milk to his ensure plus since he started to boost the calories.

Christine, I will ask his dr about Gabapentin today at his appointment. Thank you for the suggestion.

We are neighbors Grumps! I'm in the Lewiston/Clarkston area so we can't be too far off.

The preconceived notions and bias of mj get to me sometimes. Being that the opiates are the most commonly abused drugs in the US, addicts are more likely to raid your parents home for the pain meds then anything else. If you've never seen the extents to which heroin and hydro/oxy addicts will go to stop the withdrawels it's pretty scary. I've never seen that with pot heads, ever. I never did drugs period before cancer as I was very health conscious and I had the same preconceived notions about mj, I was very ignorant.

I was put in a position where I did not have access to my pain medications and my brother suggested it and being that I was in real trouble I used it. Pain, nausea, increased appetite, sleep aide, anti anxiety and anti depressant all in one. It helped me eventually ween myself off of a bad opiate dependency and now I'm drug free, I was on an opiate in one form or another for 2 years, 18 months of that was high dosages of fentanyl. The way I see it, it's just a tool, like any other drug that we have to be subjected to during this process only there's never been a known OD from it nor are there any known drug interactions. The side effects are minimal especially when compared to the other drugs in our arsenal. Do yourself a favor and look up the side effects to the opiates, benzodiazapines and sleep aides they normally prescribe, they scared the hell out of me.

Anyway I hope your Dad finds relief and I'm very glad you've found these forums.


Eric

Eric, no freaking way. I live in Clarkston.

I was thinking either Clarkston or Asotin. I live up river in Orofino. I was treated in Lewiston, my MO being Dr. Pant, RO Dr. Anderson and my ENT is Dr. Bury.

We are neighbors!

You know if you are on Facebook you can look me up as Eric Statler, I'm the only one in Idaho.

Dad is also being treated in Lewiston. His ENT is Dr. Burry, RO is Dr. Anderson and his MO is Dr. Drake.

Eric, I sent you a friend request. I'm Rita.