Hello,

Just wanted to introduce myself to everyone on here. I will be the caregiver for my husband who as I said we have just found out he has cancer. I am thankful to have found this site. I have been looking for one to join for support and information. My husband had open heart surgery 3 yrs ago and I found a forum for support though that and so when we found this out I knew we would need another one. We go Monday Feb 5 for a pet scan and a bioespy. He has scc from what we have been told. We are praying that it has not spread but he is said to be in stage IV so I have been pretty scared as to what we will need to do. Just started reading on here and seem to have lots of info.

Welcome to the site. You will find tremendous support from all.

As soon as you know, let us know exactly what the Dx is and what TX is planned.

Welcome. I'm sorry that you have the need to be here, but this forum is a blessing to all of us with OC. When you feel like it, please be more specific, and you'll get more specific support. I know that now everything is swimming in your head, and you don't even know what questions to ask.

Another poster wrote to ask me for specific questions I wished I had asked my doctor before my surgery. I thought that was a wonderful request! He and I have had similar surgeries. So....if you will be more specific, perhaps someone will guide you in the same way.

No matter what, we all support each other, because we have so many things in common.

I'm glad you found us. You're in for a battle, there's no way of sugar-coating that part. You aren't alone though. Everyone here will help with advice, experience, and empathy. A couple of suggestions while you're waiting for your first scans..take a deep breath.


Write down all of the questions that you have, as they occur to you. If they get too numerous, send them to your Doctor in advance by fax so he has time to absorb them and offer answers.

Take another deep breath. Repeat.

This is serious, and oral cancer is dangerous. fighting it successfully is "doable".
It is "win-able" and we're all here to help

Let us kow how the scans go
Wayne

Thank you for your responses. I will let you know as soon as we do as to what everything is and the treatment we will be taking.

Welcome and I to am sorry that you are here. I hope and pray that your PET/CT and biopsy will be negative. We usuually say around here that it isn't cancer until the pathology confirms it, but you seem very sure that your husband has been confirmed to have SCC?

We will be here to answer any question you have when ever you want.

Tim

Welcome blc6571,
My father was diagnosed a little over a year ago. He lives in Indiana and had surgery, chemo and radiation treatments there as well. Where are you located in Indiana? You are wise to search out a support group and in my opinion, you have found the best for this type of cancer. Keep posting and let us know how you and your husband are doing. I don't know what I would have done without the individuals and the wealth of information on this site. I am more the happy to return the favor...........Kim

Welcome blc6571,

As always it is a double edged sword meeting people on this site -- good to have support but bad to be fighting cancer. The important point is that this forum community can help you do just that -- fight and fight hard.

I am a survivor or tongue cancer and what the folks have suggested above is great advice. My girlfriend at the time (now wife) and I came up with four pages of questions and faxed them to my doctor before I was scheduled to see him. He spent over and hour going over the questions with us before we went on to the surgery and radiation.

Keep us informed and we will help the best we can.

Take care,
Jim

We just got back from Indy today after the bioespy and pet scan. The doctor tryed to get the pet scan resolts before we left but was unable to. However he did say that from the biospy it is scc in stage 4. Said he will know more when he gets the offical pathology report and pet scan. I am to call his office tommorrow to see about moving up the start of treatment. At this point he hasnt mention doing any surgery. The primary is at the base of the tongue.
Kim, we live in Lafayette which is about 1hr from Indy. I hope to get marvin to start posting on here also I think it will be good for him to have people to talk with you have or are going though the same things. Thanks so much again.

I want to pass on a little good news. We are thankful to find out that Marvins cancer has not spread other than were we knew. The doctor said the primary is at the base of the tongue and has gone to his lymph nodes on the right side of his neck. We go friday 2/9/07 to meet with the chemo doctor and then on 2/13/07 for a radiology apt. Not really sure what all to except. I will post his treatment info as soon as we get it.

That's good to hear and even better, you seem to be handling things well. Keep up the good vibes
We're thinking about you both.

Wayne

blc6571,

It sounds like a carbon copy of mine last year, BOT stage III/IV with spread to right side nodes. Hoping that all will go as well as did for me, so far. I wish I had found this site when this all started with me last spring. I didn't discover the site until I actually had completed all Tx but have still found it to be quite useful.

Good luck through your upcoming journey and thoughts and prayer will come from many.

Bill D.

blc,

You can probably expect no surgery and concurrent chemo radiation. Chemo most likely Cisplatin and Radiation most likely IMRT.

If they recommend Cisplatin, ask what % benefit it has over Carboplatin. Cisplatin can produce more side effects, especially hearing loss.

Ask Rad about protecting your saliva glands and teeth.

After you know for sure, repost and we'll give you more info on what to expect.

BLC,
I had a similar diagnosis as your husband 4 and 1/2 years ago and am doing fine. I hope that things go as well for your husband.
I live in a little city located within Houston, Texas near Rice University called West University Place. Most of the streets are named after universities around the country....we live on Lafayette street!

Best of luck,
Danny G.

Marvin had his apt. with the chemo doctor today. She will be starting him on a low dose of taxol and carboplatin. They dont want him on cisplatin because he already has hearing loss and they dont want to chance him losing more. They will do this every tuesday while he is doing his radation treatments. He will be getting his port in on next tuesday before we meet with the rad dept. They are also going to schedule for him to have a feeding tube put in just incase he will need it. They said he is stage IVA T2 N2. Will post more after tuesday visit next week. I am not sure what all the codes mine the t2 n2 but that is what they said to us.

Hi, blc6571, just wanted to chime in and tell you that my hubby had carbo\taxol too and thanks to good anti nausea drugs, had no issues with that part. He did lose his hair, but it has now come back thicker [and less gray] than before. Radiation will be tough and he will need your support and attention. There is lots of good caregiving info here, and those of us on that side of the fence will talk to you anytime you need us to. By the way, my daughter is an RN-working at Methodist in Indy- she has held my hand for two years. If you need a hug, let me know and I will send her to you. She used to live in Lafayette, but now resides in Franklin. [She loves to "have lunch" on her days off.] Good luck going forward. Amy in the Ozarks

Amy

Thanks for the message and support. From what I read you are going though rough times yourself. Our prayers are with you. My daughter went to Franklin College for 1 year and played basketball for them before switching to IUPUI to go into medical fields. She has one more semester. She is in Hostpial Administration. Was trying for Rad program but that is reaaly tough felt that God had closed the door on it so went with the hospital admin instead. We also have one son at Indiana state majoring in music ed and one who just recently graduated from purdue. Its a small world when you get to know people. Thanks again for your support. I am sure I will be posting alot once things get going. Marvin had open heart surgery in Feb 2004 that seems like a walk in the park compared to this.

Here's the link to Staging and 'T' terminology:
http://www.oralcancerfoundation.org/facts/stages_cancer.htm

To get lots of information from this group, go to the bottom of the Forum page and click on the Foundation Homepage link; once there, browse through the Menu entries (and submenus) to the left. Even more info can be found by using the Search feature at the bottom of the Menu.

Can anyone give a general idea as to how much time Marvin may be off work. We are trying to figure out how to handle his time off. He is the main source of income for us. I work only part time. We have 2 kids in college that we pay part of their living expenses. Plus we are paying on our other sons loan after he has graduated. He will probable take that one over soon but for know we are paying. He will be able to get short term disability for 6 months but that will not be enough to cover our expenses.

Small world, indeed. My daughter graduated from Purdue, and worked in Hospital Admin for 4 years before going to nursing school.
As to how much work Marvin will miss, that's a real tough question. Altho most people experience the same side effects of radiation, the recovery period and the ability to work vary greatly. Depending on his job,he may be able to continue to work through the first few weeks of radiation, but after that, he is liable to feel lousy for a while [most people do] He will need time to rest and get proper nutrition. [I am glad to hear he will have a tube, just in case]. Keep us posted. Amy in the Ozarks

blc,

Tagging on to everything Amy Oz said, I would count on him being out of commission appx 6 weeks.

Well if you havent heard Indiana had one of the worst snow storms in a long time and we had to go to indy for Marvin to get his port in and his a appt for simulation(i think that is what it was called) We were lucky and went down Monday night and stayed at the hotel connected to the hospital. The main radiologist could not get in but the did his port and also the simulation and will have the doctor look it over for the treatment of rad. The resident doctor that saw us said he may have some nodes on his left side that look funny so they may treat both the left and right side with rad. He told us if they did that they would not be able to save his salvia glands. We will take the dry mouth and kill the cancer anyday. So we are now just waiting to here what our next step is. We had to spend another night in indy because they called a snow emergency in Lafayette. We finally got home today around 3.

blc,

I had rad to my entire neck below my chin and my docs never said I would loose my saliva all together. It's been 5 1/2 months post Tx and my Dry Mouth gets better every week. I'm to the point now where I actually enjoy eating again and it shows since my weight is increasing to where I am beginning to watch what I eat again. For a while I never thought I would say what I just said.

You may want to question that statement.

I also had dry mouth but after a year I am starting to get some saliva back. I had Amifostine/Ethiol but only completed half the series because I developed allergy to it.

You might also ask them about a dental/saliva stent to protect teeth and saliva:

Dental Stent at M.D. Anderson CC

Barb --

Ask what sort of radiation your husband will be receiving -- if he has IMRT they should be able to spare some of his salivary function, though it will certainly get bad before it gets better.

With amifostine (ask about this too), it can help preserve more salivary function, but it's a nasty drug to take. Some folks get through the whole treatment (like my husband) but usually not without a struggle, some have to stop part-way through but (per our radiation onc) even a half-course helps. Our RO, one of whose areas of expertise was salivary-sparing, told us that IMRT can preserve about 50% if the plan is configured to do this (this will depend of course on what areas have to be radiated), and amifostine can add about 10-15% to this.

My husband also had a BOT (and tonsillar) tumor, spread to two nodes, it was human papilloma virus positive as are a majority of cancers presenting at these sites. He received 33x tomoTherapy IMRT at Hopkins, both sides radiated, amifostine and also, carboplatin only -- this in summer '05. (His medical onc rarely uses Taxol as she has not found it to add much benefit and it can cause severe allergic reactions, plus peripheral neuropathy, in some patients.) He had a pre-existing hearing loss too, the reason for no cisplatin, and several tests post-treatment have shown no further damage so the carbo- was a good call. He has good salivary function, which is improved by taking the drug Evoxac 2x a day.

If your husband was a non-smoker, you might ask about HPV testing as this type of oral cancer appears to respond better to chemmoradiation and has a relatively low recurrence rate. The initial treatment would be the same but it does provide some optimism.

Gail