Rosevlr, You and your husband are in my prayers.

I imagine we're all thinking of you tonight. Hope to hear some good news soon.

I've been keeping up on all that's going on and hoping today
was a good one for your husband. Please post so we all know how he's doing, keep up your good thoughts. We all are pulling for your hubby and your whole family. Susan

Sorry, it's been a long 2 days. I brought the laptop both days but was parked so far I couldn't carry it. Last night I went to get it; once I logged on, the hospital kept disconnecting my connection every 10 minutes.

Surgery started at 7:41am. I was able to stay with him until he went to the OR. Normally family isn't allowed into the 2nd room. I had questions for the Dr which got me in. The Dr told me to go home; he said sitting in family waiting would be rough on me with my back problems; it would be a 5 hour surgery with 2 to 3 hour recovery. I'd gotten about 3 hours sleep the night before & was exhausted. Hubby also wanted me to go home, told me to take a nap; so I made the decision to leave which I regretted.

After the Dr called, I gave it 1 1/2 hours then went. I was sent to family waiting where there were no updates. The room was huge & packed. I sat there going out of my mind for 30 mins then was called to recovery. After a while, the nurse then tried kicking me out a few times; saying they weren't set up for long visits. She was actually pissed at me for giving him ice, wetting his lips & giving him chap stick verses her Vaseline. Thankfully I didn't go, the Dr & his team came in. I left after that, they were going to move him to his room. I'm sure nurse meanie would have been pissed if she knew I gave him his cell phone. lol

I stayed a few hours; made sure he was as comfortable as could be & made the drive home. I don't recall if I even ate my TV dinner, woke up on the couch at some point sitting up freezing. Glad I set the alarm as I wouldn't have gotten up yesterday.

He texted me yesterday morning so we were able to communicate. I ended up getting there at noon, and soon regretted going so early. I didn't think he'd go home. After walking & eating he felt somewhat better, started looking better as the day went on. At some point they were not going to discharge him; I ended up explaining to the nurse that I wasn't sure if I could make another trip the next day due to my back & driving/standing/walking so much. I was also exhausted, hadn't eaten since Sunday. We had Taco's Monday, just sat down to eat when they called about surgery time. I couldn't eat after that. The most I'd had was cereal. He called the team, one came in, that got the ball rolling. We got home about 8:30; had to drop his script, then go back to pick it up. Hospital refused to fax them for me so that I didn't have to wait.

What they gave for pain isn't working so I had to drive back to Philly to get the script :(

The Dr ended up taking the right tonsil, the neck mass as well as lymph nodes. We won't know more till Monday. He said that cancer was also in lymph nodes.

What's hurting him the most is the feeding tube. It's around the muscles in his stomach. Once we can get his pain under control, he'll be able to sleep.

What a rough few days you've had! I hope you are soon both able to get some good rest and start the road to recovery. Be good to yourself too. Keeping you both in my thoughts and prayers and hoping for the best possible news on Monday.

tina

Roselvr-Thanks for updating us. I am thinking of you both.

One more step forward. Will be thinking of you and your dh, sending positive energies and prayers your way. Take care.

Oh roselvr, what a horrible last few days. Hopefully the news will be great from here on out and thanks so much for trying to update us as often as you can. We sit here being a bunch of worry warts.

Hospital time seems tomove in slow motion. Everything takes so darn long and there is no distractions. I took Lord Daniel to UCSF on Monday for an appointment (by myself). As our luck would have it, they wanted to admit him for tests, which was totally unexpected. I waited with him until I just had to start the 3 1/2 hour drive home and got home around midnight. We left at 6 AM so I was burned out BUT his tests turned out great and he is home again.
His Drs were concerned that vasculitis had moved into his nervous system but it hasn't. Woo!

I know what it's like to just sit in hospitals waiting and worrying. It is exhausting. I wish you and your DH nothing but the best from here on out. Let us know on Monday!

Praying for a good outcome. Hoping you both are able to get some rest and soon this can all be behind you.

Thanks for the update, hang in there (driving all the way back to Philly for an Rx? Tell them to get in the 21st century!). Wishing for good news on Monday.

That's what it is, hospital time moves so slow. Once I went back after surgery was done, I was glad I did not sit there all day. When I've had back surgery, he's gone to work; then comes back in time for me to wake up; but I'm not used to being on this side of it. lol

The script was a narcotic. NJ has very tough laws; I know this due to my back problems. I spoke to the pharmacist when I dropped it off, he said there isn't any way around it. When I spoke to the nurse on the phone, she said if there was no way someone could pick it up, there might be a way around it; so I'll have to ask what they meant when we go Monday.

I'm going to try to get a local family Dr Monday or Tuesday. I think that would be the easiest to call Philly, then have them call the family Dr to prescribe.

He had a decent day yesterday.

you and your hubby are always in my prayers....

Thinking of you both and sending my very best wishes.
Big hugs,
Jen

There should be a pain management doc in the area that can handle the scrip for you locally. A family doc may not prescribe the kind of pain meds that are needed.

Thinking of you both and hoping today was a good day in even a small way.

we saw the Dr today, looks like chemo and radiation :(
The Dr said there was branching of the cancer, so it's stage 4. We pretty much knew that due to there being 3 sites.

We see the cancer center on the 12th and 22nd.
The ENT Dr will meet with them this Wednesday and go over everything.

I'm going to look into pain management as well as call the family Dr once I'm able to stand after my coffee. lol
I had a thought driving to Philly today. My pain management Dr had a nurse practitioner that left and is by me so I think I'd like to set him up with her. Her niece who is my daughters age (16) is fighting Leukemia.

I'm glad I popped in to check out your updates; I can only wish you strength and courage through this trying time. Thanks for keeping us posted.

Oh roselvr. Stage 4? Radiation can be a miracle situation. It put my Mother's cancer in remission for over 35 years. What kind of cancer is it? Do they know yet?

I'd certainly find a local Dr for the triplicate meds. I'll bet his Oncologist in Philly has a solution. You can't be the only one who travels for treatment.

So sorry to hear the news isn't better. Did the doctor give a prognosis for his type of cancer? Remembering you from the photo thread, you both look so young for this.

Wishing you strength and endurance for the fight. Remember, it's not the diagnosis that it once was. New treatments are always coming along, too.

Sorry to hear he is at Stage 4. My sister in law was at stage 4 when she was first diagnosed with colon cancer. That was 5 years ago.

Oral cancers are squamous cell cancers.

Always examine the options. Before they put him through the rigorus therpy he is about the enter, please make sure you get more than one opinion on treatment and prognosis. Ask them about the side effects. Do some research on the net for alternative treatments. The more knowledge you gain, the more you begin to understand. Knowledge is a important tool for the decisions he will make concerning his treatment.

Continued prayers for the both of you. I'm sure the last few days (weeks) have been overwhelming. I agree with another opinion, hope you have a treatment plan worked out soon. Try and take care of YOU too.

tina

Jersey girl, yes, squamous cell carcinoma.
I'm going to be doing exactly that, looking at options. I've already started and have a few in mind myself. Once we see the team in Philly we will know what their plans are. Right now they won't have any plans until the meeting tomorrow.

I've contacted the nurse practitioner that used to work for my pain management; I would love to get him to see her. I've also scheduled an appointment with the family Dr as well as moved his appointment from the 12th to Monday for the oncologist. When we go Monday I will then get his radiation appointment changed.

Everything was set up when I called the cancer center right after the initial diagnosis. Now that he's had surgery, we can get moving.

We know from the pet scan that it hasn't spread to any organs, so that's good. I feel pretty good about his chances of a full recovery. The Dr is still saying good chances 85%. He's young & healthy. I know he's going to be down & weak but we';ll deal with everything as it falls in our lap. As long as he can continue to fight, we'll manage with everything else.

Roselvr,

This is great news and what a fighting spirit! 85% chance is a wonderful number, considering he is stage 4. Woo!

To being young and healthy! Hear, hear!

(((More hugs to Mr and Mrs Roselvr!)))

85% is so good -- great news! Youth will be on his side. I believe my mother's chances were much less than that and she is now cancer-free, even after a metastasis had occurred and a second round fought.

Roselvr...You and your hubby have a big "family" pulling for both of you here at GW. Go attack that cancer with gusto, and stay strong!

Sounds like you have a good plan. Can NPs prescribe narcotics? I'd take 85% odds any day, that is great! So they didn't have to take part of the tongue, when does the feeding tube come out? I hope he is feeling better soon. How many rounds/how many months of chemo does the dr feel it will take to lick this thing?

An aside on the narcotics - my mom just had surgery on her foot, dr Rxed oxycontin. That's supposed to be super stuff (super controlled too). It didn't do a thing for the pain and made her sick (or the pain did). Turns out she lacks an enzyme to process it. She had to get something else (I didn't ask what), is bringing the oxy to dr's tomorrow to see if he can do something with it since she can't use it and can't return it. I knew you could be allergic to meds, but never knew that you could end up with them not working (esp. a narcotic!). Hope your DH doesn't have a problem like that.

Good luck getting rid of the narcotics. I tried to donate brand new boxes of powerful pain medication to Hospice after my mom died (cancer). They couldn't take them. Called the hospital to see if they disposed of them. They do not. They advised me to melt them in a jar of water then dump them (!!!???) Hello! I am on a Septic!

I shredded the opiate pain patches in my paper shredder and melted the pills in a large jar of water, which I than wrapped up in bubble wrap before placing it inside several plastic bags. I reluctantly put it in my trash.

Hey, I had teens t home at the time. There was no way I wanted any of that stuff around my house. I had heard too many stories about the 'RX' generation.

Rose-
Please be aware of the side effects from radiation therapy in the oral cavities. Try to look for an option with the least amount of radiation. Okay? And make the doctors tell you what those side effects are.

Don't let them do whatever they want. The decisions are yours.

Ajsmama, I know that there are drop off's in some states to donate unused medical stuff. I don't know if they will take oxycontin. Didn't Eileen mention donating unused colostomy stuff at one time?

As far as the nurse practitioner, yes she can prescribe as she was the one writing my scripts at pain management. She's prescribed some pretty powerful medications that I wasn't able to tolerate - morphine, methadone, percocet, Oxycontin. I contacted her to see what office she's currently practicing at. She wanted to stay in pain management.

Usually, the doctor will flush it down the toilet in front of you or they will do a pill count, write it in your chart, then dispose of it the way state laws say to. You can usually find the information on the DEA web site - Oxycontin is a schedule II narcotic. My dad used to get sick from generic oxycontin, which they pulled off the market.

The feeding tube is a precaution for the radiation side effects. Right now, I know more then he does; but that will change. I know the radiation will burn him, both his skin and inside. I know there is a good chance he will lose his taste buds. I could cry thinking about that part of it. It's why I'm still going to call the new tomotheraphy once we see the oncologist. He's already signed up for a taste bud study, so he kind of knows he may lose them.

We were praying he wouldn't need radiation, just chemo. I also asked if they were testing the cancer to do targeted chemotherapy. They know some chemos work better with some cancers.

No cancer on the tongue - Thank God! That was one of my biggest fears. While I know people can lead full lives without a tongue; that is my husbands decision to make; not one I was comfortable making.

Roselvr,

Although I am not a frequent poster, I have been following your story and wanted to tell you I will be praying for you and your dh. Thank you for updating us, as I know you have any number of more pressing things to do right now.

Your dh is very blessed to have you to be his advocate; you are doing a fantastic job of educating yourself in order to ensure he gets the best possible care. Blessings to you for modeling love in action for your dh.

My best wishes to you and your husband on your journey. Because you are in the PA/NJ area I wanted to pass along attached website/info for Dr. Magaziner. A very good friend of mine passed it along to me; although I have not yet contacted them. According to her, these doctors work WITH, not instead of, traditional therapies. They concentrate on what kinds of foods to eat and vitamins and what ever, to help your body best tolorate the chemo and radiation. They provide additional strategies for treatment - but again, not instead of traditional treatment, but to allow your body to tolerate and take the most advanatge of the treatment.

Thoughts and prayers being sent your way.

For some reason, the system won't accept my link so here it is for you to cut and paste:

http://www.drmagaziner.com

Geogirl, thank you so much for the link.. that was on my list of something to look into the the IV vitamin drips. You saved me some googling until I found what I was looking for lol

jbrig, thank you. There are times when I don't feel I know enough but am fortunate that I do have some experience.

My old neighbor who we are still close to but they live in another state; I spoke to the hubby's mom; she's been to Jefferson and said he's in a good place. She also reminded me to ask for a parking pass which totally slipped my mind. We had one at the cancer center my dad went to. I'm sure it would have hit me to ask eventually but now I can ask on Monday.

I'm grateful to have the support of these forums as well as friends.

Rose-you are amazing.

Jefferson is a great spot. They should have the ability to target test his cancer genetically for the appropriate treatment. If they don't have it they can send his tissue to a reference lab that does.

Have you looked into Fox Chase Cancer Center in NE Philly for any type of consultaion or information into the treatment of his cancer?

Fox Chase in Philly is my next choice; waiting to hear what the oncologist says Monday. I also have an email into my ex-BIL who is a cancer drug rep; want to hear from him on what his choices would be. If he gets back to me today, I will call Fox Chase or wherever ever else he recommends.

Testing the cancer was something I asked the day of surgery, I know they are able to test it to target the chemo. I'm also trying to figure out the cancer his dad had, it's so rare he was the 32nd person to have it. I also emailed one of his sisters to try to get a cancer history; as there have been about 6 people in his family that have had cancer. With technology the way it is, if there is something genetic, I'd like to find out asap so that others can get tested.

I packed my dad's stuff up yesterday; 2 tote bags worth; fit into a plastic file holder. I also looked at it again to see if there was anything I could use; I had questions from my ex BIL, so I'll redo it on the computer so I can save the file; unless I already have it on my Windows computer.

He's doing good today. Drove himself to the dentist up the street (I had my own appt) then over to his tractor trailer to start it. I asked if he needed me on my way home, was driving by where he parks he said no. He also managed to cut part of the lawn. He's hoping doing a few things makes his stomach feel better. Sleeping is still something that's not good. I've told him to take pain meds but he doesn't want to. Hopefully tonight he'll listen.

I echo jerseygirl's assessment -- you are amazing. I'm sure your DH thanks his lucky stars every day for you. Our family holds yours in their thoughts.

Thank you Flyleft, and once again, I can't convey how touched I am at the support/prayers.

I learned a lot when my dad had cancer but I did things wrong. When he got switched to the local Fox Chase I kept telling him I didn't want to have him there & wanted to go back to the Cancer Institute but he kept saying no due to my back & he was tired of traveling after 7 months of it. Had I listened to myself he might have lived longer as the old place would have hospitalized him for his last infection, this place wouldn't & my dad begged. His arm swelled up like Popeye from the PICC line. The Dr we saw there felt that my dad was terminal; guess he wanted to play God.

There were a few other times we lost a week or so due to holidays which also probably cost him his life. I'm not making the same mistakes twice. With cancer, time is not on your side.

My Ex BIL got back to me, he said Cooper is good but Jefferson is better. He doesn't know anyone in Philly for this type of cancer, he said 10 other types of cancer but not head/neck. He said if I need more help he will be glad to contact his Philly MD friends to get a recommendation. He said to ask the MD for prognosis, most likely they will give it at 5 year survival, then ask about longer time lines.

I feel very lucky that he's nice enough to give me his time. The last time I called him 6 months into my dad's diagnosis; because I didn't know he was a cancer drug rep.

One of my goals is going to try to get my databases online to share with others in this situation. Technology has come a long way since my dad; I'm fortunate to be able to use it.

This is weird - I just got email from my mom saying that my dad's cousin in CO has the same thing. My great-aunt didn't even find put til the night b4 the surgery (biopsy?). They took his tonsils, he's getting feeding tube in next week and is starting hi-dose chemo and radiation the 12th/13th.

Don't mean to hijack, just thought it strange that it is same thing(?) in the same area in relatively young (mid-50's?) man. I don't know what hospital he's going to - anybody know a good cancer center in CO?

Praying for a positive outcome for you and your husband through all of this.

My husband had an unmatched bone marrow transplant with radiation and chemo when he was 8 yrs old. It was for a very rare genetic disease that would have otherwise killed him. He had to have a feeding tube for a couple months and it took a while for his taste buds to come back to normal, but they did. It was a very hard time for him and his family- a couple times they told his parents he wouldn't make through the night, but he did. He's been healthy and normal for a years now.

I think working with some homeopathic type therapies to help the body heal from some of the radiation and chemo side effects is a great idea.

My eastern medicine dr. does this with a combination of diet, acupuncture, and supplements needed custom to your blood work. He has a lot of post chemo patients and they seem to improve so much faster and experience the pain and side effects less.

roobear, from what I've been reading, the complimentary therapy looks good for cancer patients. I've been reading some at the link that was left.

ajsmama, what's even weirder, someone I know from citydata's brother has it as well and had surgery in Colorado; they ended up puncturing his esophagus. Not sure if the gal gave me the name of the place that did everything there; she was trying to get her brother out here to be treated. He's in bad shape from what she's told me.

What a shame they didn't do the surgery like they did for my hubby where he had everything at once. The feeding tube has been the main source of his pain. I couldn't imagine him doing it right before radiation. It was one of the smartest things his Dr ever did.

The amount of cancer in people our age (40-50's) is scary. It's why I've still been trying to keep up to date on everything just in case.

To find a good center, you want someone affiliated with the National Cancer Institute - you can find it on their web site. I have a post on Citydata called cancer tips, in the health section, subforum cancer - it's probably on page 2 by now - see if you can find it. I gave links plus my tips.

My eastern medicine dr. does this with a combination of diet, acupuncture, and supplements needed custom to your blood work. He has a lot of post chemo patients and they seem to improve so much faster and experience the pain and side effects less.

Roobear, can you share your doctor's name or an organization or group he might be affiliated with? Thanks.

Squirrel- His name is Dr. Kong, his practice is the Northern Illinois Medical Group in Rockford IL. They have four chiropractic physician/acupuncturists, a family physician, and a neurologist on staff.

Roselvr, I am really impressed with how you are handling this. Your husband is so lucky to have such an incredible advocate.

I have been reading along, quietly keeping you in my prayers, but I wanted to chime in with a suggestion. We used Dr. Michael Murray's book How to Prevent and Treat Cancer with Natural Medicine when my husband had cancer. There is a lot of info for chemo/radiation support and specific recommendations for different kinds of cancer. We went the alopathic route (surgery) but used everything we could while waiting to get through the initial appointments and the eventual surgery date.

My best wishes for strength and healing to both of you.

Thanks, Roobear : )

(((Roselvr & DH)))! I can't imainge what you're both going through. I would be so overwhelmed.

Rose-don't be afraid to ask your doctors office, if the work with any homeopathic doctors along side the traditional treaments.

Cooper has a very strong pathology department. I know that for a fact. I know who runs it. Just because they are not in Philly and they are located in Camden does not mean a thing. The hospital is aggressive and being in an economically depressed neighborhoor has has worked in their favor.

Roselvr -

I'm glad the link was helpful. I've been to Jefferson (although, not for cancer issues) and it's a great facility. Top of the line doctors. Wishing you and your DH a healthy future.

I'll be back later to update and respond.

Ajsmama - Can you email me from my member page? I want to send you a copy of the questions I brought with me today.

I'm not nuts about the oncologist we saw; so I've been busy trying to figure out if we are staying there or not. They gave us the clinical trial info, so I've been trying to look more into those to see who else is doing what. He's not sure he wants to do one.

We saw the radiation oncologist yesterday and liked that team very much. They answered the questions the oncologist didn't. Some of the test results weren't back when we saw oncology; so yesterday's appointment was very helpful.

Hubby found a family Dr, she's younger then us and very nice. She has no problem prescribing in an emergency and also gave him something to sleep which didn't work last night. She's hoping that taking the sleeping pill for a week will reset his sleep patterns.

The radiation team wanted him to see his dentist to make sure his teeth are in good shape. My daughter had an appointment for the dentist today, so I switched it, gave that one to my hubby and rescheduled hers. They did a mold of his teeth for a fluoride tray and will have it back in a week.

He's going to do 5 days a week of radiation for 6 to 7 weeks. They are doing both sides of the neck. It will start the last Monday of the month.

The radiation Dr said that his chances are good. They can only give a 3 year survival; he said 80-85%. He wondered why our original appointment wasn't until 2 weeks later. I explained how it was set up after my hubby's PET scan and before we had the surgery date, he was glad I called to reschedule it sooner. We will go back to Philly next week, he will get fitted for a radiation mask; meet with oncology & clinical trial and let us know exactly what the plan is. There was a chance his chemo drug would change.

Chalk his cancer up to HPV, the test was positive, which was in his favor; surprising enough.

Thanks for the update. Wow, HPV. HPV shows up in the oddest places these days.

I know of a case where HPV showed up in lung cancer. The patient had past history of breast cancer. One of the girls I work with recently was diagnosed with dysplasia from a biopsy. I suggested she ask her doctor to test the biospsy for HPV.

Knowing the root cause of the cancer is so important. I believe that HPV would be in his favor since it eliminates a primary. I remember you mentioning his scan was all clean.

In case your wondering, the reason I know so much about cancer is that I used to sell and instrument and antibodies for cancer diagnosis. Even sold molecular probes for HPV. Pathology has been my background for most of my working career. That's why I know all the hospitals in NJ.

Jerseygirl, I figured you were some how connected to cancer.
If you'd like to email me off the forum with someone you recommend; that's fine.

Do you have knowledge of what the best chemo drugs are for his type? My ex-BIL mentioned something different which is why I'm second guessing things. I'm still waiting for him to get back to me. He was in Germany; so I knew it would take a few days.

Rose,

I sent you a message on your Gmail. Let me know if my email address does not show up.