I'm only beginning my treatment and I already feel beat. The chemo made me very sick and I'm depressed three days later. Meanwhile radiation continues and there is no chance to breath. I'm already loosing my voice. I worked for one hour today snaking a drain, I'm a plumber, and I almost passed out. I feel helpless because I will not be able to support my family the next 4-6 months. My work is very physical and I'm already weak. The hard part is everybody tells me I'm one of the strongest people they have ever known but I don't feel that way. I wish I could cry but I don't know how. I feel like a big baby for even putting these feelings into words.

Hi,
I didn't think that my husband would have a hard time coping at all. When he walked into the treatment deal he thought he would do good and be able to work on his bathroom, he is remodleing. He had lost his job two weeks before christmas. We have 8 radiation treatments left and two chemos. He can hardly move. I found him this morning all most passed out in the kitchen from gaggiling with salt and it burnt his throat so bad. The outside of his neck is aweful almost like hamburger.
He has broke down and cried and I have not seen that in him since we went out together. and that was only once. We have been married 35 years next weekend. So if you need to break down I don't feel that is a problem.
Pat

Watt...I wish my husband was not out of town this week or I'd have him write you a post. I think you put into words how he felt...my husband did eventually cry...sometimes he would go to sleep hoping he wouldn't wake up...ever. He started treatment feeling strong and healthy...and, ended treatment feeling anything but strong and healthy.

Due to the physical demands of his job, he was out of work from June 07 through February of 08. It was hard on him, on me and on the kids. But, in reflection...those nine months were a tiny part of his 50 years. And, a blip on our 20 year marriage.

I know it's hard to see the light at the tunnel...and the tunnel probably feels impossibly long right now.

Are you self employed or working for someone? Do you have the option to stop working and to give in to the rest your body is asking for?

Watt,

Are you an employee? Have you been paying into the California State disability program? If you have, file a claim! This is exactly what its there for! And its a really good program.

And you are most certainly NOT a big baby. Oral Cancer treatment is really rough, no matter how strong or tough you are.

Seriously, it sucks.

- Margaret

Margaret,
Thank you for your reply. I am self employed but I have been paying into state disability through my small corporation. I am waiting to hear if I qualify for benefits and if so how much. I have let my wonderful well trained employee go. I guess reality has hit me hard and I thank you for reminding me that there is light at the end of the tunnel but it seems so far away right now. I do have a wonderful support group but I truthfully feel very, very alone right now. Wish I could just skip the next six months. Sorry, what a baby.

Hey, on this forum, you're not alone. I promise you that, absolutely.

And, fyi, a few years ago, when I was still in CA, I had to have surgery, was out for three weeks, and the state paid a huge percentage of my salary. I can't remember what it was, but it was good - really good.

Margaret,
I do have the option of not working but I need the income and I was hoping that I had at least a few more weeks to finish some pending jobs. I'm very responsible and I don't like letting my customers down. In fact I never really have let any down before. I know that this is a time to take care of myself but I can't help but think if I dig a little deeper for the strength...

Watt, I've been there bro and trust me man it's tough. It's ok to cry and let it out man. I was this big burly guy, ex grappler, boxer, mixed martial arts and there I was crying because I didn't want to continue my last chemo or 8 rads treatment. I ran a couple of hotels and consulted on a few more and I had to stop work and haven't been back since due to continuing treatment and surgery.

I had bills to pay and stressed out about making all of my payments...in the end finances worked themselves out and the things I was worried about didn't really matter. What mattered most to me was my next breath, my next moment with my wife and kids. Life was more then just my things, my lifestyle etc...just being able to live it was what was important.

You are a strong man, you've lasted longer then I did workin and you can do this if I did. Focus on the next moment and let the rest of it work itself out.

my email address is [email protected], you can find me on facebook with that if you ever need to chat it up or need an encouraging word or just need a sounding board.

Keep fighting this evil bro, keep your chin up and keep swinging.

Eric

[quote=Watt]
I know that this is a time to take care of myself but I can't help but think if I dig a little deeper for the strength... [/quote]

Watt,

I can assure you, your clients and most of all, your family, are/is going to be whole helluva lot happier if you save a little of that strength for yourself as you do battle with this disease. A few months of inconvenience is nothing compared to the alternatives. Please, never lose sight of that.

Watt,

YOU ARE NORMAL. Period

This cancer does a mental number on anyone. How could one not be affected by hearing that they have a Stage III cancer that has a 50% chance of killing you EVEN after getting treated? Then this state of the arts (?) barbaric treatment starts which I feared more than the damn cancer and on the vast majority of us it's very tough to deal with. But please know that the worst will only last until about 3 weeks post radiation. The dark tunnel you are walking into right now, you will emerge from and I project a really good chance that you will totally beat this crap.

I stopped working about my 4th week in and didn't/couldn't start up again until about 4 weeks post Tx and then it wasn't a full day. I was both mentally and physically weak. I couldn't concentrate on anything for more than 5 minutes.

Have you been tested for HPV?

Who is your caregiver?

Hang in there and if you want to talk just send me your contact numbers via a Private Message.

We will be with you night and day so don't hesitate to ask anything or just bitch. We all know what you are going through and you will make it. I guarantee it.

Watt, I know how hard it is to admit weakness but here on OCF no one will hold that against you because we've all been there or gone through it with loved ones. I did break down and cry one day and when my wife asked why I said "I don't feel up to this, I'm failing this test". Well, I didn't fail. I'm not particularly strong or macho but I did get through it and am still getting a little better day by day. Meanwhile, I sure hope SDI will help you financially. No one needs that stress on top of it all. But, mostly, take care of you and keep your strength up.

To Eric S and all the above respondents,

Thank you for the insights and words of wisdom. I'm catching the general drift of this; I'm not alone, nobody wants to go through this horrible treatment but we do what we have to do and eventually we reach the other side.

I have never been on a forum before so this has been a refreshing spark and it gives me hope to hear from all of you. I have a loving and supportive wife and two sons one in college and the other starting high school. Both are home for the summer and I am a little worried about them seeing what will happen to me. I like to think of myself as their rock. Perhaps it will bring us all closer.

Eric, thank you for touching on the finances and talking about the things that really matter. My dad died this year on January 13th and he would always say that things will work themselves out. I'm sure it will hold true this time.

Davidcpa, I will ask my doctor tomorrow about HPV testing. Shouldn't they have checked when they did the biopsy?

Thank you everyone and thank you OCF.

Hi Watt,

Most doctors do not test for HPV unless you make the request. Often insurance doesn't cover the cost...so you may end up paying out of pocket if you decide to get the test done.

HPV related cancers are only found in the Base of Tongue and Tonsils...although not all BOT and Tonsil Cancers are HPV+.

What we are learning from posters on this forum is that HPV related cancers seem to respond well to treatment and appear to have less chance of recurrence. If you search on the main page for HPV you can find more scientific data than my general summary.

Some people get their biopsies tested for HPV for peace of mind. I think DavidCPA is un-scientifically adding up the percentages of all the posters who are HPV+. Although, yesterday his math led him to 120% so we don't know how reliable he is. (Just Kidding David!!!!)

I'm sure your facility still has your biopsy sample so if you decide you want to get the testing done, talk to your doctor.

I hope you keep posting...and, we'll keep rooting for you and sending positive thoughts your way.

If your wife needs some support (because it's hard to see someone you love going through a hard time)...encourage her to join the forum too. Or, if that's not her thing let her know that she can email me at mhupe(at)live(dot)net.

My kids were 12 and 13 at the time of my husband's treatment. There is no doubt that it had a huge impact on them. But, I do not think it was all bad. My kids saw their once very active dad laying in bed crying multiple times...they saw me sitting on the porch crying...they saw me and my friends crying. Cancer can really make a person emotional. And, this particular one is tough because I don't think a lot of people understand just how challenging the treatments are.

For one of my daughter's freshman papers this year, she had to write an essay on a life changing event...she picked the summer of treatment as her topic. It was interesting to read her perspective. She felt helpless at times and she wished she had done more for her dad (she did plenty but that is her perspective)...her final take away is that you have to live fully in each day...because you never know what the future may bring. That's not a bad take away.

My kids saw the whole cycle...from the decline to the recovery. I think it has made them more compassionate.

If you or your wife or kids want to learn more about our story, I kept a blog through treatment. I ended it in Oct of 2007...but recently added a picture of Dan from a cruise we were on in April. It's http://dangreivell.blogspot.com/

There really is a light at the end of the tunnel...and, it's not a train. :-)

Margaret,

This is Jeff's (Watt's) wife. Thank you for such a supportive reply and sharing your blog with us. I originally got Jeff started on this forum so he wouldn't be so isolated. It is truly a wonderful supportive sight for both of us and a comfort knowing there are many who have gone this who understand.

You have a lovely family and we are so happy for you both. Your anniversary picture is beautiful!

Jeff is a bit taken a back by what your husband went through and so I'm writing this as he takes it all in. The best advice I have is for him and I to take it one day at a time.
We have a huge supportive community around us ready and more than willing to lend a hand. We don't have to deal with insurance claims as we belong to the Kaiser group and have hit our high deductible in one week!We are going to ask about the HPV testing.

I think Jeff now is ready to let go of work. He does heavy lifting and is the sole owner and worker of a plumbing company.He is not thinking straight and is already worn out.Plus I work part-time and I can't stress enough to him that we will be okay and his job is to heal. We had to cancel our trip to Hawaii so we are focusing on June 2010 as a post vacation treat.
We realized that your time frame on the blog is almost the same as ours. Your children are lovely and it was nice to see how the children lives continued to weave in and out of the several months of treatment.

We have a college student who needs to go back to school in the beginning of August. It would require me to me out of the house for 2 days to travel with him. I'm a bit concerned about Jeff's mental state at this time since it will be 4 days post treatment. I have several close friends and family that could stay with him... not sure...but I need to decide soon for air travel. I guess that is a small dilemma compared to the bigger picture. I know we will get through it... but I'm not the one getting the treatments although I'll be very much part of it.
I'm sure Jeff will now post since he has figured out how to use this forum. I'll post too! I don't know how to do a blog but my son can show me. Right now I'm doing group e-mails each week.

Thanks you again for your invaluable feedback and family disclosure of the treatment process.

Vanessa and Jeff Watt

Geeez make one tiny math error and the world drops down on you!

Hi Watt, Listen to David and Margaret. You will need all your energy and disicpline to beat this enemy. Take care of your self first and the rest will come, by taking care of yourself you will give your body the weapons it needs to win this war! I went back to work full time two weeks after Tx ended and plowed snow for 19 straight hours on the 4th day back! We all heal differently, so let your body work its magic in this war. Keep up the good fight. Semper-Fi Bob

Hi Vanessa and Watt,

I hope my blog didn't scare you. Dan had Erbitux...and, it was later determined that his high fevers and chills were a result of that. Everyone has different experiences.

The one thing most people will tell you is the hardest part is the 2 weeks post treatment. So to answer your question Vanessa, I would not travel 4 days post treatment if there was a way around it. 4 days post, Dan was not able to drive, and he was not making good decisions (due to the pain meds). He got really dehydrated and had to go (unwillingly) to the hospital for hydration. Eventually I was able to coordinate home health care IV hydration through my insurance company.

If you do have to travel, I'd have someone stay with Watt if he is on a lot of pain medication.

Bob sounds like he faired better than Dan if he was working a 19 hour day 2 weeks after treatment. ROCK ON, BOB! But, most will tell you that the hardest part is actually post treatment...about one to two weeks after the treatment...and, then things start to improve.

Just so you know...Dan wouldn't have been out of work for as long as he was if he had any say in it. The company he worked for was hq'd in Switzerland. I think there were issues in the translation of the form the doctor needed to sign to release Dan back to work. All of the questions asked were followed by "for 8 hours straight." So, for instance...is the patient able to hold 30 pounds over their head for 8 HOURS STRAIGHT? Our doctors and nurses tried to reason with the form originator...but, it was a long process.

So, the fact that you are self employed will allow you to return to work at a pace that is comfortable to you. Don't use Dan's timeframe as a guide. For most people it will likely be somewhere between Bob's experience and Dan's.

Watt, do you have a feeding tube and/or port? I think if Dan had a feeding tube he would have had a little bit easier time. Swallowing got tough in the last few weeks.

Vanessa, I found the blog to be very therapeutic. I started it up because I was getting tired of spending the little free time I had conveying information to worried relatives. It ended up being a family project with the kids...they were my editorial advisory staff and they'd often remind me that something they conveyed to me was "blog worthy." And, they also enjoyed deciding on which photos we would display. When they were away visiting relatives, they'd check the blog daily to see what I posted. It's really easy...I had never blogged before. If you need any help, let me know.

Vanessa, Watt...please stay in touch. If you have any questions, we're a friendly bunch and we'll do our best to answer them.

Jeff,

Real men do cry and they even eat quiche. What you are going through is something I wouldn't wish on my worst enemy (well maybe one of them).

We are all pulling for you and a caring wife like Vanessa, both of you will surely find the strength it takes to get through this and get back to work.

David,

No excuses...you making a math error is almost as bad as me extracting the wrong tooth. (That has never happened).

Jerry

Dear Margaret,

Jeff here checking the forum and happy to hear from you. Vanessa is working for two more hours but I'm sure she will write you when she gets home. Yes, the blog on Dan did scare me a little. He went through so much. I think I would rather be tortured by Jack Bauer from 24 or beat to within an inch of my life by Tony Soprano's mob. Just get it over with.

Radiation treatment 5 today and met with my doctor (28 more to go, good Lord!). He's found sores developing in my mouth already so I've started gargling with salt water and baking soda solution. Loosing my voice. He was able to get me an appointment with a behavioral psychologist who works only with cancer patients, tomorrow, through our hospital. I'm not sure what I will say but I'm guessing the words will come easy once I get started.

The PEG feeding tube is the biggest topic of discussion between me and my medical team. The choice is mine to make and I have been reassured that it can be inserted if and when necessary. My doctor is confident that the degenerative effects from radiation treatment will come on slowly, monitored day by day, which will allow us to do the procedure before we reach a critical point. I'm sinewy for a plumber so he doesn't want to allow more than 10 lbs weight loss before the last treatment (one can dream).

Time to rest but first I think I will hold 30lbs over my head for 8 hours straight.

Best regards, Jeff

Jerry,

Thank you for your kind words and I love the quote.

Jeff

What you are feeling is very normal. I got my diagnosis just 6 weeks ago and I still have a difficult time. I actually began counseling to help me cope and deal with it. I have not started chemo or rediation and do not know if that is the path we are going to take. We are waiting on a PET scan to find out idf the surgery got it all or not. Once we know that then we will mak our decision. It is okay to cry as this a horrible thing to have. You will be in my prayers.

Dear Jeff,

After I read Vanessa's post, I went back and re-read some of my entries (I haven't re-read a single entry since the dates they were posted). YIKES!! Sorry to have scared the crap out of you!!!!

I can only hope the burn in your arms from holding the 30lbs over your head for 8 hours straight takes your mind off the not so pleasant things you might have read. ;-)

Always remember that everyone's experiences with this stupid, stupid cancer are different. It wasn't bad 24/7. There were good moments and bad moments...and some awful moments. But that was Dan's story. Your story might be entirely different.

There are only a handful of people that I have read about who have not lost more than 10 pounds. Dan lost over 40. By the time his medical team was deliberating if he needed a PEG (that was post treatment)he was in no condition to have another procedure done...and yet he couldn't afford to lose another pound.

While the hospital Dan was treated at was the best in the area, they did not have a tremendous amount of experience with Dan's particular cancer. And, they didn't have ANY prior experience switching a patient over from Cisplatin to Erbitux. My advice would be to get a PEG while you are feeling strong and healthy! If I knew then what I know now I would have demanded one early on!

Because Dan was often dehydrated (partially because of the no PEG situation)and his veins were a little messed up from the chemo...the nurses had a very hard time getting IV's started or blood tests done towards the end of treatment and post treatment.

With the PEG you can get fluids down, much needed calories and the protein needed for healing. It also helps with any medication that is too big or difficult to swallow.

If you have 5 treatments down, you have one week out of the way...you only have 5 1/2 weeks left!! Piece o' cake! :-) Part of the battle is mental, so keep the faith!!!

Great that you are connecting with a behavioral psychiatrist! Spill your guts out and tell her about the crazy woman who scared the crap out of you! ;-)

I'll keep an eye out for your postings...when you are over the hurdle and on the road to recovery, I'll share with you the really, REALLY awful things that occurred during treatment (Kidding, Just Kidding!!!) Apparently, I shared it all in my midnight ramblings on my blog. :-)

You have a good attitude...and a sense of humor...both will serve you well during the weeks ahead.

If you get the PEG before the nuking process screws up your throat, it can be put in by a Gastro-Doc using a endoscope and you can ask for a big bore (20F); if it's put in later by a Radio-Doc, it's more likely to be a smaller (Read clog-prone) 12F or 14F. Doesn't take a plumber to see the advantages of the bigger bore <grinz>.

It was nice to get home from work and see all the replies. I can see how this forum is addictive. I run home and check it before my e-mails?

One issue at hand is the PEG. The medical team really wanted Jeff to try and do it without one. I read on this and other forums that the advice was to get a PEG. Our doctor said take what you read with a grain of salt!
So... we have decided to go with the PEG. Jeff has already lost 6 lbs from the tonsillectomy and is slowly putting the weight back on with lots and lots of ensure. We know that won't last long as the radiation treatments continue. He is already quite slim to begin with.

Margaret, if I do go away post treatment for two days I will get a trusted friend to stay with Jeff. You didn't scare me. Your info was the same as all the experiences we have been reading. What we get is that it is a hard journey, but people get through it.

Vanessa

Hi Vanessa,

I could never interest Dan in going on this forum, but for me it was a life line! I would read him posts occasionally to assure him that what he was experiencing was similar to what others went through. And, I would post his questions...but, to this day he has never gone on this site. I think it's great that you and Jeff are both here!

Sooo glad that Jeff is getting the PEG. I had the same experience as you did when I mentioned to Dan's team that I had read the PEG was important. I know now that we would have had a much easier time if Dan had a PEG. Getting medications down towards the end of treatment was a real process...liquid medicines burned and pills were hard to swallow.

Good that you have someone who could stay with Jeff if you do go away. There are a few people who got through treatment and recovery without a caregiver and it amazes me. Dan would not have been able to go it alone...and, he'd be the first to admit that.

Glad the blog didn't scare you...it was an odd experience for me to go back and read some of those old posts. Fortunately, those are now distant memories...as this journey will be for you in time to come. :-)

PEG vs No PEG debates abound, I lost 70lbs with a peg in, I couldn't imagine what I would have lost without it or if I would even be here.

I just had my peg removed a few weeks ago and to be honest I feel naked without it...although I look better naked without it but that's too much information :P

Congratulations on having your PEG removed! Our doctor said only 50% of her patients get the PEG. Who are these people? I know a few that have done it but more that have trouble keeping weight at a acceptable level. If my husband lost 20 lbs it would be too much. He is already down 10lbs from the surgery and only 6 days into the radiation and that is with many many ensures and lots of fatty foods to try and fatten him up!. He never could gain weight. I can't imagine losing 70lbs!

Vanessa

Vanessa,

Consider Carnation Instant Breakfast VHC. It has 560 cals in the same size can as Ensure so by drinking the same number of cans as he does now, he will get many more calories. As time goes on this will be critical. I didn't have the Peg and I didn't have anything to loose but I ended up loosing 30% of my total body weight. I looked and felt like death but I credit the VHC and 3000 calories a day (only 6 cans) for pulling me out of my tunnel.

I looked like a blue gill that had been out of water for 2 weeks with my 70 lb loss. Got back up to 185 and then an aneurysm reocurred which is a 1 in a million deal, Right back down to 160 and not up to 167 and ready for the other half of this stinkin aneurysm repair, He couldn't do the whole surgery because he thought I would die or he would kill me. One day after this is over Take a collection and buy me some teeth will you all? LOLat least for cosmetic reasons if not to eat.

The "instant carnation" seems to be the key to gaining weight. We will go buy it first thing tomorrow! Thanks for the tip.

Vanessa (Watt's wife)

Hi Vanessa,

The 560 calorie Instant Carnation VHC that David is referring to has to be ordered through a pharmacy. Most pharmacies...at Walgreens or Target can order a case for you. You don't need a prescription, to be honest, I don't know why you can't just buy it. Usually only takes a day or so to come in.

Hope all is well today! :-)

I was wondering where to buy it and Margaret magically answered my questione. Thanks! Next stop Walgreens!!!! Jeff is okay. Radiation is making him tired and his jaw and teeth now hurt. He finally threw in the towel today and officially shut down business. Thank goodness for that. The disability check came today. Not much $ but a little something to help. Hang on.. here we go...

Vanessa

Sounds like a bit of a rough day. Hopefully, now that Jeff is taking a break from work, he will get the rest he needs and feel a little better. During the first half of treatment Dan always felt a better on the weekends...I hope that is your experience as well!

I was just reading your signature line. Wow, the timelines are close. Two years ago today Dan was starting treatment. So, Jeff has 6 days up on him!

I don't recall seeing a treatment plan quite like Jeff's. He is having 2 full rounds of Cisplatin? That seems like a lot. Did your doctor warn you about ear's ringing? If they start to ring or there is a strong sensitivity to sound...tell your MO right away...permanent hearing loss can be a side effect. Dan's loss is minimal. But, they did change his plan when the symptoms occurred. And, of course, there are many people who did not experience that side effect.

I'm sensitive to the hearing because I woke up 2 months before Dan was diagnosed without hearing in my right ear. A weird case of sudden onset adult hearing loss. I kept thinking that we couldn't raise two teenagers without at least one of us having good ears. ;-)

Margaret,

The dates ( 2 years a part) are so close and Dan was just a couple years younger. 2 children...etc... Dan even looks a bit like Jeff. I'll have to send you a picture. Each of our boys ages 14 and 19 went to the radiation treatment with him, saw the big machine ( 2 weeks brand new state of the art machine) and got a tour of the facility. We are only 15 minute drive away. We were shocked how far you had to go for Dan's treatment.

The second round of chemo will not be Cisplatin. We don't know what it will be yet. Jeff had some ringing in his ears but it wasn't bothersome enough to make note of. His next chem is July 2nd. He is still nauseated but were not sure that is not from the radiation. He has meds for that.

He is really depressed. The psychologist talked to him today, but he doesn't have his next appt. for 2 weeks. Our insurance plan has counseling but not every week. He'll go to a support group and hopefully that will help. She prescribed Prozac which I think is a bit premature considering this is situational depression and his feelings are quite normal. The fact that he gets up to go to treatment, eats and generally participates on this forum and sought out counseling is a good indication he is coping. Who wouldn't be depressed with a cancer diagnosis? He did get sleep meds and ant-anxiety meds which I believe will help. Prozac isn't out of the question but the side effects that need to be managed and all sorts of dosage changes is a bit much for now. We will see how it goes for the next week or so. I'm in the mental health field believe it or not and I'm always amazed how some doctors reach for the anti-depressants first thing. I would like him to learn breathing exercises and visualizations to relax. Whether he wants to do this I don't know. Okay, I'm rambling.Looking forward to a weekend without radiation. The sun is actually shining today, pretty good for San Francisco which is very foggy and grey for the next few months.

Vanessa

Vanessa,

Would Jeff want to talk to Dan? He just got home today. Dan's not an online kind of guy...but, he'd be happy to talk to Jeff on the phone.

Dan did end up on anti-depressants post treatment. He took Wellbutrin. He was really struggling at that point in time when they were prescribed and he just could not see the light at the end of the tunnel. He took them reluctantly for about 3 or 4 months. I didn't have your training or other ideas to try out, so I was relieved when he finally agreed to take them. Plus when he started on them, he couldn't do counseling because he had lost his voice. It did help him...but, it's not for everyone.

I still think Dan might have been able to fair better if he had gotten a PEG. The post treatment time was rough...dehydration was difficult to deal with.

How interesting that our families are so similar. I'd love to see pictures...are you on Facebook?

Let me know if Jeff would be interested in talking to Dan.

Margaret

Watt-

You are not a big baby. You are tough and strong. This is a most brutal treatment in a very sensitive area- it compromises our speech, our eating. You'd have to have a heart of stone not to feel sad or upset. See what you options are with taking disability. It isn't an easy process but that's what disability is for-- to help people who are sick when they aren't feeling good enough to work.

Don't feel guilty. Try and see if someone can help you file for disability. I think the American Cancer society could also help you. there are many organizations out there.

Wishing you complete healing from this diseaes.

KATE

make sure where ever you go to order it that it's the one with 560 calories. Walgreens screwed up twice before they got it right.

David,
I'll make sure and order the one with 560 calories. Thanks for the tip!

Margaret,

I think it would be great if Jeff spoke with Dan. That is if Dan wants to. Jeff is doing better today.

I'm not on Face book. I haven't had the energy to add another item (electronic) to attend to.

Vanessa

Vanessa,

I'll send you a private message on here...if you haven't received one yet...look for the flashing envelope up on the menu bar.

Glad Jeff is doing better today...weekend is here...bet you are both happy to have two days without treatment :-)

Margaret

Vanessa, you can also order VHC through Amazon (Be sure to go to Amazon through the button on the OCF Home Page so OCF gets a little referral cut). The prices are competitive -- Everybody charges shipping.

Vanessa, I highly recommend facebook to help keep everyone updated. My wife and I would get exhausted just returning all of the phone calls in a day, when we switched to just posting our status/updates on facebook it made thing sooo much easier.

I totally agree with you on the Prozac, I actaully told a doctor the same thing...of course I have depressed moments...I have cancer, who wouldn't? A bit further on in treatment though got rough for me and I lost it, but we upped the amitryptaline I was taking as a sleep aide and it got me through the hard time and we dialed the dosage back down to sleep aide level...of course I had to stop taking it because it stopped helping me sleep by this time.

Keep breathing and hang in there guys!

Eric,

Are you sure it was amitryptaline? Amitryptaline IS an anti-depression medication.

I was just talking about it with my doctor recently. Some doctors are prescribing it for "off label" usage as they are seeing additional benefits of the medication for people who have issues with insomnia and chronic pain and a variety of other concerns.

The most commonly prescribed sleep aids are Ambien (Zolpidem) and Lunesta.

I have insomnia issues...so this is one area where I have a fair amount of knowledge. Ambien comes in 2 dosages. If you are at the highest dosage, which is common for people who have insomnia, you can't dial it up. I know, I have asked many times.

Hi Margaret
just thought i'd chip in here honey.Amitryptilline is indeed an antidepressant but during research they have discovered it is useful for other things as well,so they jiggle with the dose.Rob was prescribed 10mgs at night for trigeminal neuralgia,and then when he was in hospice they gave him 25 mgs at night to help him relax and sleep.I think as an antidepressant they are given three times a day.

by the way nice to see you back in the swing of things and wading in here

love and hugs liz

Hey Liz!

Good to see you too!! Thanks for clarifying!! That makes much more sense now.

My doctor who wanted me to try it for insomnia told me there were no side effects to the medication...so I looked it up because I don't think there is a drug out there that doesn't have side effects...but, I didn't look at the different dosage amounts.

I've missed you Liz!

Actually amitriptyline has lots of potential side effects--sedation, appetite increase, dry mouth, constipation, etc. At tiny dosages typically used for sleep, the sedation is the most prevalent side effect (figures), but dry mouth, constipation are possible which is a bummer when the other cancer tx can cause the same things!

That is what I read...can you believe a doctor would say a medication has no side effects?? Sorry to have hijacked your thread Vanessa and Jeff!! :-) Hope you are both doing well!!

Well I'm very sure I was on Amitriptyline, I take nothing I don't know the ins and outs of. My drs where looking for an alternative sleep aide as I refused to continue to take Ambien because it's evil, I had horrible side effects from it. The side effects of amitriptyline are kind of a "good thing" in some aspects. Appetite increase was apparent which was good in my case as I was wasting away there for a bit and had lost 70lbs.

The sedation effect was what helped me go to sleep at first but it stops helping after a bit, I use Trazedone and Lunesta now to sleep. Dry mouth...I had radx to the head, I didn't notice a difference lol. As far as constipation goes, my pain meds are probably worse for that but I didn't experience that. Really the amitriptyline worked well for me during my rough patch and didn't work well for me for a sleep aid long term, but it did help for a bit. It's also used to prevent migraines.

Either way, I didn't feel it was a bad drug for me, it definitely did it's job and I didn't notice any "bad" side effects.

I am taking neurotin and that is for eptileptics, I take more than a friend of mines daughter with that disease takes and I just started another that is for soemthing else. 900 mg of neurontin seems like an awfully large dose the other is just one time a day so it is easy

Jim, actually 900mg of Neurontin/gabapentin is quite a small dose for that medication. There are many people who take a few thousand milligrams of it daily. Your friend's daughter is taking a very low dose if she's taking less than you are. Just an FYI, b/c the numbers sound big but mean nothing in comparison to other meds.

Jeff and Vanessa

First off, "even the Best fall down sometime". Everyone told me I was the toughest guy they had ever met and I certainly had a self concept of warrior. Yet, I sat on my couch and just wanted to die many many times during treatment. I should have cried though (held on until the recurrence and failed swallow test). You are hardly a baby to be knocked on your ass by this disease. Even to this day, there are certain songs that my wife and I cannot bear to listen to as they evoke those terrible terrible times.
One concept that will be helpful to you both once you are through this is "the new normal". Basically it means that radiation is the gift that keeps on giving and that even after all the TX is done, life will never be the same but very different. Hard as it is to believe, but you actually adjust to all this travail and sorrow and side effects. Feel free to vent here anytime as we are the only ones who truly understand what you are going through. Hope all goes well
charm

Charm,

Thanks for the words of wisdom. Jeff is adjusting to the mental state of just going day to day. He is just at the beginning of treatment and can still eat pretty well. I'll give him your message since he hasn't been wanting to go on the forum in the last few days.

Vanessa

Vanessa,
Where is he being treated? I went to UCSF. I basically had the same Tx without the tonsillectomy.

Gary,

He is at South San Francisco Kaiser. They just opened a new radiation facility at Oyster Point with brand new state of the art machines and all new team. So far so good.

I have Kaiser too and consider myself lucky that they didn't have RO facilities when I was treated. I don't have any experience with the RO but gauging by the money they spend on other equipment and facilities, I would imagine that they have state of the art equipment. I'll have to have my MO in Walnut Creek arrange a tour for me. I work in the radiological devices industry. Their main image management system and patient IT system was supplied by one of my former clients (Stentor - now Phillips). Do they have tomotherapy?

Gary,

Don't know much about the equipment, but you should take a tour since it is quite the facility.

Vanessa

Equipment is one thing - the experience of the personnel programming it is far more critical.

My RO at UCSF wrote the book on IMRT for both breast and head and neck radiation. I had a high degree of comfort/confidence factor being treated there. Being a NCCN member CCC was a big plus.

I have to admit I have been happy with all of my other Kaiser doctors.

From the time they made my mask to the first tx, I gained 6 or 7 pounds and they had a heck of a time putting it on...Man was that mask tight!..Of course after loosing about 50 pounds it was a little loose near the end...

Wasn't Blue Lagoon with Brooke Shields?

I liked that movie the "Swamp Thing"...he was green...


I think I posted this on the wrong forum...

Ray,

We call that Chemo Brain. lol

It sure gets confusing what forum topic ones is on..... I can't find my last post and I am the caretaker. Is there such thing as caretaker brain? Ray, you wanted the procedure and treatment forum. I just go off it and found your post here.

Vanessa

Vanessa,

Go to the top of any page and you will see MY STUFF (that's your stuff). Pull down screen to MY POSTS and it will list all your posts and you can click on any one and it will take you to it.

It's no wonder CG's suffer memory lapses with all they have to keep up with!!

Hi Vanessa and Jeff,

So glad you found this site, I know what Jeff means about being addicted to it. When I first found it I was on all the time!! I spent the first weekend glued to the laptop. It really has changed my life. Vanessa, I think there has to be care givers brain...I don't how you guys do it. I always say I think it's easier to the patient. Sounds like you are awesome at what you do. How is Jeff doing? I read most of this post so forgive me if this was mentioned. Is Jeff seeing a therapist? I think I saw something about this. If he is, I think that is awesome. It took me 2 years to take that step. The first 2 years during all the appointments and surgeries I was on auto pilot. Then one day I cracked. I went to the therapist and cried for the entire hour..man did that feel good. I'm a new woman today and still see my therapist every 2-3 weeks.

I'll be thinking of both you and look forward to reading your posts.

Suzanne,

There is no way it can be easier to be the patient. I wouldn't wish this treatment on my worse enemy. You have to be so brave to get through each day!

Good for you that you finally see a therapist. It is really important to a have a safe place to vent and just be real.

Jeff saw a therapist once and he has a another appointment coming up. Unfortuataly our insurance is such that he is only seen every couple of weeks. He has joind a support group for now while he can get there.

Take care,

Vanessa

Everyone handles situations differently. And how can one know how you'll react until you're already waist deep in all the muck?

How true that is!!

I remember being told about the Peg and all I could think of was "hey, that's for really sick people and certainly I'm not one of those" and then the doc told me about the possibility of severe pain, severe weight loss, etc and not ever having to experience something like this before in my life, I said "bring it on, I can handle it". Well it brought it on and I was not prepared for it!!! My treatment was a humbling experience.

I noticed that you are a Marine. My husband retired in 1984 after 20 years active duty. His diagnosis of SCC was so unexpected, that he is still reeling. He is half way through chemo and still has 20+ radiation left. What worries me is he has just about gone to bed all the time. He gets up to go to treatment. Then most of the day he is in bed. He gets his nutrition through a PEG on a continuous feed. I have scheduled an appointment for him to see a psychiatrist next week because he is so depressed. His mental outlook is something I didn't expect. Do you have any ideas what I should do to help him? Thanks. Pam

Pam, Im sorry things are so difficult for your husband. Being a Marine, Im sure this is very hard for him going thru something he cant control. Good news is that he is almost at the 1/2 way point but thats also where things start getting harder.

I spent alot of time in bed resting too. Radiation wears you out. If he is getting proper nutrition and hydration then thats soemthing that will help make him feel better. Many people here have had to take anti depressants to get thru the mental aspect of this terrible disease.

Make sure you take a few minutes for you daily too. Dont let this wear you out also, it can be a very difficult job being the caregiver.

Hi Pam,

That is great that you made an appointment with a psychiatrist for him. I think you both will be happy you made that choice. Does your husband want to go? I starting seeing therapist 2 years after my diagnosis and I wish I had done it sooner.

Like Christine said, take some time for yourself too. Talk to a friend about something,anything that is not cancer. It will do you some good. In regards to helping your husband..my idea may not be for all but...When I was home from my surgeries Ray would rub my feet or my shoulders. He made me tea and just other nice things to make day a little bit nicer. Or, when I went to bed he would scratch my back. It really helped me.

Good luck and I will thinking about you.

Pam,

Without knowing all the side effects your husband is experiencing I can only imagine what he is experiencing is totally normal and he needs to understand that. He also needs to understand that it will be tough until about the 2nd to 3rd week POST Tx and then he will start to recover. His life will change somewhat due to the side effects that usually remain after our recover is complete but most likely he will be cancer free. Please remember that without this Tx he would have died.

The mental aspect of this and probably all cancer is often ignored or at least pushed far into the background by our treating doctors and we, the patients and caregivers, are left to deal with that by ourselves. We are seldom equipped to do that and it often causes problems throughout the treatment and beyond so I definitely agree that consulting a mental specialist, especially one that has experience with cancer patients, is a wise thing to do. I think it should be SOP with all cancer patients to have a mental specialist as part of their treatment team.

Not for all of us david old buddy. That would just get in my way and plan of action. LOL My fault is I was raised to be independan and am big time.

Jim also liked being held down by the mask if I read right....lol

David, I agree. It is hard for a person to understand what another is going through, unless they have been through it themselves. Or has spent time talking and studying cancer patients. MD's treat the physical illness, not so much the psychological effects that come from the cancer. Who's to say what another person needs to get through the day or treatments.
No matter what the background.

Best wishes, luck and many blessings,
Kenny

Jim,

I was (also? lol) stupidly stubborn and I didn't have this site to reason with my attitude during Tx but with the caregiving of my wife, I survived despite my self. Perhaps my stubborn outlook also prevented me from lasting mental issues but I do remember feeling helplessly vulnerable soon after Tx ended.