Is there anyone out there?!!! - Oral Cancer Support

there are some beautiful people on this forum but I'm getting a little frrustrated with answers to questions and I see alot of people asking questions and no one answering them. Is everyone on vacation on at the beach? My problem is very small compared to the poor people going through much worse. May God bless all of you, but try to make new friends and answer a question asked by a stranger. I read them and cannot answer them because I haven't been through Chemo and I haven't been through alot of the problems people have.

Tony - Can you tell us more about you and what your frustrations are? Are you still in treatment? What is it that you need answers to? I'm sure there will be someone with a similar experience that can help. There are a lot of compassionate, knowledgeable people here and also a search feature at the top of this page that might anwer a lot of concerns/questions. On the Home Page there is a wealth of information and another search feature, too that can lead to more answers for you as well as help develop the questions you might ask here or with your doctor. Let us know what's happening.

Tony - people here try to answer everyone that posts, but some do slip through the cracks.

It can also sometimes be that like you have said, the poster has asked a question that only a few people have experience with, and so they may read a post but have nothing productive to reply with from their own experiences. So they do not reply. You can understand this from your own postings I'm sure, since we only have a couple posters that like you have had a total larygnectomy... That makes most of us inexperienced when it comes to talking about that subject. The posters here do the best they can, and that they even come back after treatments to try and help others at all, makes them great people in my book.

I also would like to add that in this particular topic there were 3 threads about ORN. 2 had no response but the third one had 12 responses which thoroughly covered the subject. Having been on the boards now for almost 5 years, it can be draining to constantly keep repeating the same information. That is why we posted the "how to" section. Many early visitors here are also unaware of the wealth of information on the main site. We really do attempt not to "ignore" any new posters however.

And, as Brian said, in some rare cases, people have a problem that very few here are familiar with. This forum is about sharing of personal experience, strength and hope.

Hi Tony,

I'm not at the beach...although I sure wish I was. :-)

I read all the posts here, it is helping me get through each day of my husband's treatments. However, I often don't feel qualified to enter a thought. And, to be honest, some days I'm too tired to have a thought. But, reading what people write...old and new threads...is a big part of what gets me through each day. I am so grateful that Brian had the amazing insight to create this incredible coping tool.

Oral cancer is so broad, and I know everyone is dealing with different issues. So, while I don't feel I can contribute to everyone's threads, I do include everyone on this forum in my prayers.

It sounds like you have been through a rough time. Now that you have had a total larygnectomy, what is the next step for you?

Dear Tony, when I was a youngster, my Dad used to caution me about "foot and mouth disease". [I was pretty loquacious and always had a point of view]. One of the things I have learned from OCF is how much I don't know about cancer! I can talk about my husband's cancer-floor of mouth, tongue involvment,spreading to lymph nodes- and his experience with 3 surgeries, radiation, chemo, Erbitux, and I can talk about my experience as a caregiver during the journey.I read all the posts on the forum and feel really badly when I don't have the knowledge to respond. I think everyone here is trying to be supportive within their area of experience. Amy in the Ozarks

We have a new member in this forum screen name dancingwithroses aka Alan.He is my UK cancer buddy and is a 9 year survivior post total laryngectomy.I know he would be more than happy to help any one here who needs advice regarding laryngectomy and life afterwards,so PM him or get his e-mail address from his profile.He will respond i am sure and his experience makes him uniquely qualified to answer all your questions.

Hello everyone, I didn't mean to upset anyone, and I'm sorry if I did. I was just frustrated! I have lost my voice and my electro larynx gets a little hard to use sometimes. Thank you all for your replies. I realized that everyone here is doing the best that you can to help people. If it takes a while to get help, that's fine too. All things will be revealed in thier good time. Well, I just got back from my oncologist. He said my PET scan was fine. No spots, but he says if I were his brother or father or himself, he would get the radiation. That hit me hard, he really believes. He also said that he would be radiating my neck not so much my jaw. I asked him about the radiating twice and he said it's rare but it does happen. He also said ORN was very unlikely. He came highly recommended. So, I am relieved about the PET but still a little freaked out about the radiation. I know you get sick of repling to the same old questions, but any advise would be nice. He offered to arrange a second oppinion. He said I might need Chemo if I get a surgical oncologist he might recommend it. I have a good friend that just believes in nutritional cures. It is alot to sort through. Thanks again, Tony

Tony,
nobodies upset and it was a valid question and deserved an explanation.

By the way I want to thank Brian Hill. This is an incredible web site you have developed. It has been very helpful. Thanks again,Tony

Tony, I think a second opinion is very much worth your while. It doesn't do anything but good. You may well get the same recommendation, or you may not. Either way, you'll get a fresh perspective.

As for the straight nutrional cure...It doesn't exist. Certainly, diet can help you in your battle. That said, there is no evidence that suggests you forego traditional treatment in favor of changing your diet. That's dangerous territory, you've already been through a horrific ordeal, and the Doctors wouldn't recommend additional aggressive treatment if they didn't feel it was warranted.

There are a million and one quick "magic bullets" that will treat or cure cancer. Most are designed to relieve one thing; your pocket of all money that it contains. Stick with what your Doctors say,
Wayne

Tony - a second opinion is certainly a good thing to do and even a third opinion. When my son's cancer team got together, they felt that radiation would be the way to go in his case. They felt that radiation was an added way of insuring that the cancer would not come back and I'm really glad my son decided to go with it. He did have a very rough time of it tho' as many on this site have. But I have read several survivors who just breezed right thru it! A positive attitude certainly helps, too.

Tony

I as well am in NY as we have discussed in Pm ..But I didnt ask where you are recveing treatment?

Dear Sharlee, Anne Marie,Amy,Dragon,Cookey,Margaret,Gary and Brian, Thank you for your replies and advise. I decided that I will go through with it. I definetly don't want to but I believe the alternative would be tragic if it came back.

Cookey, I would enjoy talking with your friend, If I knew how to go about it. If you could guide me that would be great, thanks.

Tony, it's normal to try to avoid something you know is going to be unpleasant. In this case, though the Beast will not give an inch of ground voluntarily. You have to attack, and attack with all the vigor and determination you can muster. That's what kills the Beast, and half measures won't do.

You can make it through, and we're all her to help, just shout out when you need us and we'll be there
Wayne

Thanks everyone. I wanted to add to my earlier post.My electro laryngx is working unbelievabley well. I am no longer needing the tube that comes with it. When your throat is swollen you can't stand to push it against your throat to talk. Well today I tried it and it worked great. Every one can understand me! I talked on the phone for an hour! So I'm going to pospone the surgery to get the implant (provost II) put in. I don't like the idea of getting surgery then being dependent on the doctor to change it every 3-6 months if you're lucky. Several hundred dollars each time.

I start Radiation next week anyhow, I don't like the timing. Too much too soon. My old boss said there might be a job in the future too. That is great news! I can see that there is light at end of the tunnel. Nothing cast in stone, but today is a good day! Thank you God!

Tony, just to let you know I am thinking of you, today is a good day! Carol

Gee, Tony

Welcome to OCF. Here you will find a lot to read and some good friends too.

Do you have feeding tube? Since you are going into Radiation you might need it.. It will help you keep up with body needs and liquids.

I get the idea from your post, you have had radiation before? So I am sure you know what is going on. Your are the one that needs to understand everything that is going on with you.
Do not be afraid to ask questions, even if they sound dumb to you. No question here is dumb, we all know how things can get out of hand if we do not KNOW!! Or ask questions...
Take care,
Diane

Tony, what did they decide on the chemo? Are you going to be doing that jointly with the radiation?

Wishing you the best,

Everyone, I use that term to save space! I decided to do the Radiation after all. My doctor (the Surgeon) and the Radiation doctor were convincing enough. I have researched it and it is common practice even though I wondered how effective. I went last week to start and they fitted me with the mask(the worst part for me) and ran a CT. I was in the mask for what seemed like a half hour. Then they tatooed a dot on my chest. It will be IMRT and it takes a long time to do the mapping. From what I know there are up to 48 Lymph Nodes. The machine is 1 year old and they brought me in there and showed it to me. They are going to supply music and try to make itgo by quickly,but the machine moves alot I guess. This not like my first time. The first time was very focused on my throat. He also said he was going to give me 60 instead of 70 McCi. I know I've got the Acronym wrong. He said I might not have the harsh side effects I had the first time, but keep the feeding tube just in case. I have already had it since the first week of June. It seems like a long time ago that I almost died but I am growing more used to having a hole in my neck and talking with an electro-larynx. The feeding tube is just an inconvience. I start Radiation this Wednsday and Tuesday I have to go in to see if it is right. So I'm hoping that the swelling doesn't freak the Nodes out and result in more Cancer. No Chemo was recommended, thank the Lord. I can thank the Lord and still be a Buddhist! Don't ask! That is a longer story. Thank you for asking and I get strength from all of you.

Tony - it is so great to see how you are taking charge and staying so positive! And so encouraging to the rest of us. I love your comment about being able to thank the Lord and still be a Buddhist! (my son is also a Buddhist after many years of an association with the Lord) Any help, healing or inspiration - no matter where it comes from - is a good thing in my book!

So Anne-Marie, thank you for the inspiration! I really appreciate it. Tommorrow I start my treatment and I am relieved to start. Thne sooner I start the sooner I will be done with it. How is your son doing? Did they remove the lymph nodes or just Radiate them? The technicians told me that mine would eventually work again. I still don't understand if Rads kill only cancer or they take out good and bad. See you

Tony - I am so glad you are going ahead with the treatment. It can be a rough road but you have lots of help on this site so keep in touch as you get further in the treatment. You will find lots of good ideas to be able to handle anything that comes along. Just knowing what to expect is a big plus. My son did have the 48 lymph nodes removed plus the radiation. After surgery when they took a look at them, and they were found to be all clear. He is about 7 1/2 months post treatment and really doing great. His weight gain is slow but he was a few lbs. over when he started. He can taste everything altho' not with the same intensity and he stays pretty close to his water bottle. When I cook for him I have to make sure it's something "juicy" or accompanied by a sauce or gravy. I can say, now - and I am sure he would agree - that life is good!

Well I made it through the first treatment and I can say that this is totally different. They have these Jaws on the culomator and it is computer controlled. It actually is programed to go around the area of the first radiation I had in Oct-Nov 06. The treatment is quite a bit longer as far as time, it shots 4 times on one side then 4 times on the other side. They told me it wuld have very little strength hitting my jaw, which is important to me. My sister had all her teeth pulled on Friday for dentures, and I don't care to go through that. She did not have cancer, just bad teeth. I have great teeth luckily. Anyway the whole thing took about 8 minutes. My last experience took only about 2 minutes. My appitite is healthy and I feel great,I hope this continues. A volunteer at the hospital(whom is in the support group I joined) is really great and the technician trish, is absolutely fantastic. Apparently there are programs that help you out if you need help finantialy. She has already signed me up for help with travel. I have to do something because between now and when social security kicks in, I have no income and in about 2 weeks I will be out of money. I can't work and welfare says I can't have benefits because my 10 yr old truck is too valueable. I did get food stamps though, which will help. My friends and family will help but I can't expect them to carry me. Oh well, maybe I should post to the in treatment forum. See you later all, Tony

PS I was wondering if anyone has any experience with Social Security disability. I realize that there is a forum chapter for this but I figured I'd ask one question! I feel like I know everyone here.

Tony: I retired from managing a law firm for about 14 years...we did SSD claims...what are your specific questions? I'll try to assist you, if possible, keeping in mind that I am NOT an attorney and am prohibited from giving legal advise; However, I'll be glad to share general knowledge.....Hey, maybe you can answer questions we have regarding IMRT treatments!

Tony,
most SSDI or SSI claims for cancer are based on cancer fatigue. Your age may work against you though, The SS people don't like to pay out for people under 50. You should also be fully vested in the program. Make an appointment at your local SS office and bring copies of ALL of your medical records with you and a certified copy of your birth certificate. They will want scan reports, lab tests, diagnosis, etc. In California anyway, they have a panel of state doctors look it over and approve the claim. If your claim is approved then there is a 6 month waiting period (which is retroactive to the date of disability) and they start to pay on the 7th month.

Here is a link to the SS disability page - be very careful to provide EXACTLY what they are asking for http://www.ssa.gov/d&s1.htm

I did my own claim and it was approved in 2 weeks. I was 55 at the time. I am still collecting full benefits 4 years later and they will run out next year. I did a 9 month, full time "trial back to work" period (during which you can make as much money as you can with no penalties). They allow for an additional 36 months of benefits after that, conditional on your income. If you are self employed they only consider your net. If you work and get a W2 then they consider your gross. After 2 years you are automatically eligible for Medicare as well. Being in regulatory affairs and working with government agencies for many years helped a lot also.

It sounds to me like your eligibilty date (based on when you started Tx 9/06) was in March 07 so you should get a retroactive check for 4-5 months if they approve your claim.

You may need a lawyer but really it's a fairly straight forward process if you comply meticulously with the documentation requirements and have enough paid into the system.

Tony,

I have just been awarded my disability benefits from SSA. Gary is as usual very correct in stating there is no room for error in providing every document that they request in a very timely manner. My personal experience was that they see us as being special cases and will expedite if you show humility and a willingness to comply to their process. You will most likely be interviewed by a local state agency to facilitate a prompt determination. This will likely include a neutral agency or approved medical company comprising of a shrink and medical doctor. I also highly recommend that you notify your county and apply right away for Medicaid assistance. This will cover both meds and treatments. Seriously consider transferring ownership of the truck to your sister if you have to, but your medical expenses for proper care is your lifeline. It seems silly that a 10 year old truck is probably the only thing holding you back from aid, but it will. Besides, while you proceed in treatment it is not real smart to be driving while under the influence of heavy pain meds my friend. I personally surrendered my drivers license for now till I am confident I do not pose a risk to myself or others. The process for application for disability was unusually fast, initial application was started in October of '06 and the award was granted in July '07. As Gary stated the first 6 months of eligibility is not paid and the first check is issued on the seventh month. Medicare starts after 24 months. I consider myself incredible fortunate to have been approved on the first try. It is quite common to have to apply not only a second but a third time as well. I would not seek a lawyer at this point unless you are rejected. The local office listed below covers the 12866 area and they will assist you compassionately and thoroughly. Whatever date they select as to when your disability started is the target date your benefit starts. My local office had stated a date much earlier than I would have but when the award was made a different date was used. The official date was still earlier than the one I had felt was correct, which was the day of surgery. This assistance has helped my family and I when we really needed it and I too am looking forward to returning in Sept for my "trial back to work". Please feel free to email me with any questions you might have
SOCIAL SECURITY
530 FRANKLIN STREET
SCHENECTADY, NY 12305
(518) 382-1001
Toll-Free 1-800-772-1213

Well thank you for the advise, but I must say that I applied about 3 weeks ago at the Glens Falls office and they were unbelievably nice. When I applied there was a fresh Total Laryngectomy patient in front of her. The paper work consisted of Birth certificate, DD-214 and the bills for my surgery and SS card etc. I also have had a big day today. It seems that I was approved for Medicade and the county paid for all of my bills from March untill now. I also got a car dealer to evaluate my truck and he said $5500 to $5800 on a trade in. I brought that in to my case worker and she said it was good. So I might get that $320 a month. Combine that with food stamps and I might make it untill SS comes through. It is a big if but I am hoping. My question was about SSD, isn't that supposed to be a safety net? I have not been contacted by anyone yet. Well anyway I feel very fortunate to be treated so well by my county. They are good people and I know there are guide lines and rules to follow but the people are so nice. With my military experience and handicap I want to get a job with the county so I can give back to the people who gave so much to me. Kind of corny but that's how I feel. I figure I can work in about a year, maybe sooner. By the way When I went to Radiation today I met my new RO, and he thought that in addition to agressive radiation that I should have agressive Chemo. He made an appointment for tommorrow with an Oncologist. I am scared to death! I have heard alot of stories about Chemo but I thought I was dodging a bullet. Radiation and Chemo at the same time really scares me.

Dont let it scare you Tony be grateful that they are throwing the whole works at your cancer.i often wonder if things would have been different for Robin if he had had chemo first and then surgery and radiation,but it was never offered.So just take everything you are given in the knowledge that the doctors are giving this thing their best shot

Hello Everyone, Well I made through the third treatment and went to the oncologist. He want to put me on 3 treatments of Cisplatin. He says it will amplify the effects of the Radiation and it could get bad (the side effects), He is going to insert a cathader under my skin to a vien near my heart. Does anyone know about this? I scares me, I guess I'm worried about damage to the vien and the whole thing just creeps me out. I agreed to do the Chemo and Radiation because that is the path to remission. Although I am frightened that I might get sick and lose control of my situation. Even though I don't have any control now, I have the illusion of control. The PET scan gave me hope and therfore I believed that it was almost over. Now I feel like it never will be over. It has been the year from hell. I am going to be as positive as I can but it's getting harder to fake it when I feel down. See you, Tony

Dear Tony, sorry, but I had a laugh at your "having the illusion of control" remark. Hate to tell you, but when fighting cancer,what you control is about at 10 to 15 % of what is going on and the rest is up for grabs. :rolleyes: The more you know, the better prepared you are- BUT you will never know more that your treatment team and thus must place yourself in their hands at some point. Most folks here have done chemo and rad concurrently. Not a picnic, but lots of success stories. The catheter he is referring to is a PORT. It is a small tube placed under your skin that allows quick and almost painless access for chemo infusions, IV fluids, pain meds., etc. Many here have had one, and it is a very effecient way to get the above into your body. Without a port, you get to endure needles into veins over and over again. Don't worry about the port. Glad to hear you have made progress with financial stuff. STay strong and keep on figting. Amy in the Ozarks

Amy, You always know what to say! Thank you. I have something to say. I just read a post about making a chose between Rad/Cemo or surgery. I wrote a big reply and then after thinking about it, I erased it all. I can't even advise anyone about what I concider life and death topics. Amy you always know what to say without going too far. I would say find a doctor you feel good about and trust them. That is what I'm doing and I'm still here. Tony

Keep going, Tony - you've made some good decisions and it sounds like you have a good team of doctors helping you. Just the progress you've made on the financial stuff - which is one of the most difficult to accomplish - is great! This cancer fight is bound to make anyone feel down, and you should probably let your doctors know about this so they can prescribe something if they feel it is necessary. Some of the medications for depression take a while to kick in and have an effect so it's better to be prepared and on top of the situation. Tony - the "illusion of control" is good! Faking it until the real feeling comes back is OK. Visualizing a good outcome is a plus. Even the smallest amount of control is progress and cause for celebration and you probably have more control than you think. There is a line from the book "Tuesdays at Maury's" where the elderly, very ill professor is asked by his former student how he is doing, and he replies "I can still wipe my own butt". I have that line, in very small print, posted above the toilet paper in my bathroom, to remind me every day that I am still in control of a lot of things.

Dear Every one, I have the day off and I find myself stressed out as usual. If I don't have something to take my mind off things, I stress. I bought a bottle of pedialite and some biotine an dsome bananas.I don't know what to expect when I get Chemo. Any suggestions are welcome. I have been putting aloe on my neck every day but I know whats coming. After 3 treatment(RAD) I can taste that metal already. The last time it took a couple of weeks. I have been reading all about the side effects of Chemo and they are so vague about it, I should say generalized. Do you definetly lose your hair? I read on one web site that cisplantin didn't cause this. I almost would trade a day off for a day to come off the end. I also read some statistics which are very confusing. They call my stage IV because it went from my vocal chord to the cartlidge(Adams apple) but it apparently did not go anywhere else. I wish I could talk to anyone that had this happen to them. It iks not as common as you would think. I have heard from a couple of people that had Total Laryngectomies but none that had vocal chord cancer. They always talk about 2 yrs and 5 yrs when they talk about survival or remission. I guess these are milestones. When do I start to count because my cancer is not seen on a PET scan. Do I count from my surgery or when treatment is done? I feel strange asking these questions here, but these are driving me a little nuts. Have a nice day! Tony

Hi Tony,
I can empathise with your frustrations. It seems we'll never get ALL of our questions answered - perhaps because no one has ALL the answers. As for Cisplatin & hair loss - not everyone will lose their hair. It depends on the number of cycles & the dose. I had 6 cycles of high dose - once every 3 weeks. & my hair began to thin on the 5th cycle, thinned some more on the 6th cycle & i lost everything from the ears down from R/T. But we're all different and react in differet ways. Thats why you'll never get a definitive answer to what you'll experience and feel.
Over here they start counting the mile stones from when you finnish treatment. The C.T. scan i had after my 3rd chemo cycle showed no VISIBLE signs of cancer - yet i still had 3 more cycles anmd 6 & half weeks of R/T. & only then could the doctors say i was in remission. & then of course we have regular check ups etc.
I think it's healthy to want to know whats going on with your body. I did soooo much research - and then wished i hadn't! I came to the conclusion i'm not a statistic - i'm an individual. & i guess what will be will be. But i still wanted to know everything!

Good luck with the rest of your treatment!
Michelle

Tony, reading your last post triggered a long lost memory of some advice my [lawyer] father gave me many years ago which was reiterated by Brian Hill to me not so long ago. The advice was that we should all, when we have reached a certain age, have a plan, a will, some good documentaltion, for how our final affairs should be handled. Once we have taken care of that, we can proceed with our lives without that worry.I would implore you to STOP reading about statistics unless it appeals to you to be one. You are you! Your reactions to chemo will be your own and you will get lots of good help here on how to deal with it. As far as milestones along this road- it occurs to me that everyday I wake up and get out of bed to greet the day is a milestone- a good one- stop driving yourself nuts- you have better things to do.

Amy in the Ozarks

Thanks Amy and Michelle, your words comfort me more than you know. I guess I'm trying to justify my decision to have Rad/Chemo without any visible. My friends are asking me whats up and I don't have any answers. The doc said something like adding Chemo decreased recurrance like 29%. I tried to find that and ended up spinning around from one website to another. I know it is not very zen like, but it takes work and studying to achieve a state where you can be happy all the time. As my father used to say, eat eat, you need energy to worry!

one more question, does everyone experience permanent hearing loss with Cispltin?

Not everyone Tony,
Again it's just one those things. Your team will monitor all of your side effects closely & you should make them aware of everything you're feeling so they can tweak your treatment accordingly.
Statisticly, chemo & R/T together increases the sensitivity of cancer cells and the 2 prong approach is more common than just using one or another. I'm sure i've read it improves 5yr survival rates. But i reliterate - WE ARE NOT A STATISTIC. & a little knowledge can be dangerous! & techniqueshave come on leaps and bounds from the 5 years ago - where these statistics are taken.
Take each obstacle as it comes & take it for what it is Tony.
All the best,
Michelle

Hey everyone, I am foggy rfo the chemo and Rad. Spent 6.5 hours then 40 minute of Rad.(needed xrays)then drove across town to walmart to get 6 prescriptions filled. They didn't have 2 of them so drove all the way across townto get the 2 filled. I have to give myself the injections for 10 days for my white blood count. No real side effects to report except some mouth soreness. See you later, Tony

Well done Tony! It's a good start!
I also had the injections after my 3rd cycle as my blood counts were low. Hb- 10.4 WBC- 2.6 PLT- 174 Neut- 1.0 . Good job we're not squeamish!

Keep it up!
Michelle

Tony,
I'm having palliative chemo---just finished 3rd cycle---my only side effects really have been low neutrophils, low red cells, and general fatigue---which I handle by resting when I need to, eat as much fruit and drink as much water as I can get down me!
I'm trying to just carry on with as many SOCIAL and enjoyable activities as I can, and have got all the practical will-making/letters to kids.

Had a chest X-Ray after last 'review', but am not even going to ask about it until NEXT review in a fortnight.

My philosophy is hoping for the best but preparing for the worst!

One of my team nurses says 'sort the worries'---ones you can do nothing about, just put on one side, ones you can, share and resolve em'
Sounds good to me--(tho it doesn't always help in the middle of the night!

Brenda

hello Everyone, I spent all day today in the hospital having a port put in and getting my Radiation treatment, then getting another prescription filled it took about 8 hours. It feel kike a full time job. Then I got home and had a message on my answering machine. It seems that the 2 notes I brought in to welfare wasn't enough and I missed my employment meeting (every Thursday at 10am) I am having a hard time dealing with the anger. When 2 doctors write you a note saying that you are being treated for recurrant cancer and can't work right now isn't enough and they want more, and the office next door approved you for medicade because of disability. They told me that once you were aprove for disability you no longer had to prove it to welfare. All of this for $320 a month that I will be paying back once I get SSI! So tommorrow I will get them 2 more doctors notes on thier official forms and show them proof I was in the Hospital. After I go get a bag of IV liquids and Radiation treament. By the way only minor side effects so far. A little ring in the ears and a headache. Lose of appitite too. I am waiting for the diarea. Stress helps! See you, oh and I couldn't drive anywhere alone so I missed my support group. I have to wait another month! Bummer.

Tony...I'm so sorry you had such a rotten day....but, on the bright side, you DID wake up this morning! ...and I'm sure tomorrow will be better for you...Let US be your support group until next month's meeting...

You are loved........Lois in NC

That's why I love North Carolina! Thanx!

Hi Tony,
I am kind of surprised that they are putting in a port when you are only having three infusions?!?! Are your veins hard to find?

I had Cisplatin and never had diarrhea. There were MANY times when I wish I did ;-)

You are quite correct that being in treatment for cancer is a full time job (with overtime). Many of us had to work all three shifts!

Your date of disability is when your claim starts which would be September of 2006. They should be giving you a big retroactive check - 6 months worth! Have you worked full time between now and then?

And just an aside. Your net value is typically the fleamarket, eBay or low wholesale bluebook according to my tax planner for net worth eligibility requirements.

You can also hire a helper and the welfare department will pay for that too, driver, housecleaner, shopping, etc. it can even be your spouse or a family member. I believe it's called IHSS or In Home Supportive Services.

This is a link to the California program. It is administered by the county welfare but funded by the Fed. They may have a similar program in your state. Have you spoken with the hospital social worker?

http://www.dss.cahwnet.gov/cdssweb/In-HomeSup_173.htm

They pay me $1600+/mo after deductions for Medicare.

Hi everyone,

I'm new here and don't want to "step on toes" however, I feel I may be able to offer assistance to some.
I am a dentist in Canada and have been practicing for ten + years. I have been ten years cancer free although, not oral cancer.
I am trained as a counsellor and patient advocate and keep very up to date on oral cancer diagnosis and treatment.
Anyone who would like to ask me any questions I will answer them to the best of my ability and/or find the answer or refer you to someone who can.
e-mail me if I can help anyone here.

I hope this will help some of you.

Live strong,

Mike

Mike: I took your emails out of your posting, anyone can look at the Rolodex card next to your name on any of your posts and see your email address. This and the PM function keep the spam at bay. Spammers have really good programs that will, on their own, rip out email address from open pages web pages like these. That is why this program has the rolodex card - the programs can't see it in there. You don't want to get 500 junk mails a day.... which is a slow day for the foundation that has a pubic email address that gets ripped off the site by these programs routinely. Brian

Thanks Dr. Mike! Where were you a couple of weeks ago!

Hello Everyone, I had an interesting day today! I actually fainted! I was just getting some stuff at the health food store and wham, I just dropped out! It was definetly not fun, the firemen and ambulance people showed up and they took my BP and pulse. I told the I was okay and had the people at the store drive my truck home for me. I called my oncologist and they want to give me a bag of liquid tommorrow. Has anyone else had this happen, I feel like my neck is tight, like high blood pressure but its fine. It might be the jugular veins, I don't know. Just really curious.

wow tony ..not good

well it turns out I was dehydrated and I lost 10 pounds in a week. So they gave me a liter of saline and told me to drink a lot of water. I am feeling much better, not perfect but not too bad. This is going to be harder than I thought. It will be worth it once it is over. I know there are people out there that are much worse off. I wish you the best.

Uh-huh. Keep hydrated. If you can't drink enough liquid, go in for IV hydration every day. My son had to drive me in for IV hydration every day for 2 weeks. It's ok. It will get better.

The hydration issue seems to be pretty common. For me it was one of those things they didn't tell us ahead of time - we too found out 'the hard way'. I ended up being down there 3 times a week or so getting fluids once we knew what was going on.
I think you also have to be careful - in my opinion you kind of lose the ability to be a good judge of yourself and your own condition during treatment - sometimes it takes somebody else keeping an eye on you, to figure out you need something.

Best of luck - like RileyMc said, it will get better.

Hi Tony, here's a "grandma" trick to include. Pedialyte [found in the baby section of grocery stores] is great to have in your pantry. It is made to give kids who have vomiting and\or diarrhea and have lost too much fluid. It has needed electrolytes, etc. There are flavored and unflavored choices. You can alternate between the Ped. and water during the day, or add the Ped.to soups or other liquids you are consuming. It will give you a hydration boost and maybe keep you out of the ER! You will be fighting this paroblem for awhile. Amy in the Ozarks

Hey Amy I got some pedialyte. 1 bottle is $2.70 for generic at walmart. That is just alittle too much money for me to drink like water. So I got a case of water for $5.00 and I'm drinking alot. They say you need to drink 3 quarts a day! I couldn't drink that much if you paid me but I am drinking as much as I can.I put on 2 pounds so I think all is well. I finally got exempt from going to re-employment meetings at the county office. The doctors notes finally got the attention they desrved,all of a sudden they care about me again, quite strange. Still haven't gotten a dime of finantial help but SS is in action and the county is almost ready to give me welfare. Also I spent $1200.00 on prescriptions since Jan and I am going to get the medicade rate refunded to me. You really go through your savings quickly when you go through the cancer experience. Every one I know could be wiped out if they have one major illness. We really must do something, I don't know what but that's why there are elections. I am lucky that I have no wife or kids. As far the Chemo and Radiation, the blood work is good and the Rad is daily and not too painful, just some swallowing trouble, but I am eating solid food anyway. Damn the feeding tube! I won't use it untill all is lost.