Wife recently diagnosed with carcinoma on cheek. Been to one EEN doctor and after talking to him decided on going to a Cancer Center. She has a Cat scan this Friday and then meets with the new surgeon. Naturally concerned as she is 80 and suffers from Crohns. Putting together a list of questions for this first visit. Need suggestions to add to list. Have formed some from reading here. Thanks

So glad you found this site! You've come to the best place for the latest information and help from knowledgeable people who been where you are. It's good you are making a list of questions for when your wife and you meet with the new surgeon. The main page of the Oral Cancer Foundation (see upper left corner) has several links to all kinds of information, which can help in putting questions together for your doctor or or for anyone here. Re CAT scans, if you go to the search box upper right of the main OCF page, and put in "CAT scans" you will see this:
http://www.oralcancerfoundation.org/archive_boards/treatment/CT_Scan_Questions.htm

which has lots of information on CAT scans and it will give you and idea of what to expect. Hope everything goes well. Let us know what happens.

Hi - welcome...

My one comment (other than glad you are going to a ccc -) is - expedience. Tell them to take care of it quickly. And find out if there are nodes nvolved... Hugs - you're awesome for being here!!

welcome to OCF! Im very glad you have found this site to help you and your wife with info and support. My first time I had oral cancer it was located in my cheek, I also had a spot behind my to molar. I am glad to hear you are heading to a cancer center. That is very smart!


PS... I was just in TN over the weekend. Lovely people and state!

Returned from Dr .Diagnosed stage 4. Lookng at surgery option as cancer is in left cheek. Affects upper /lower jaw as well as cheek. A 10 hr surgery with all nodes removed. Feeding tube.Followup radiation. He gives it a 40% cure rate. Other option is just radiation/chemo with no projected cure rate. Have weekend to come up with plan. She's in good health but 80 and has reservations galore. Anyone made this decision? All help will be appreciated.

Im very sorry that you got the bad news, your wife has Stage IV oral cancer. Since she is in otherwise good health, she should be able to get thru all of the recommended treatments. It isnt easy but it can be done. Right now have her eat everything she loves and dont worry about calories. If she would gain a couple pounds its ok as most of us have lost alot of weight going thru treatments.

I was faced with the same decision. The initial surgery would have been a huge life changing operation due to the location of my tumors. I went with chemo and radiation. My tumors were gone and I was cured, or so I thought anyway. I ended up having a recurrence less than a year later with another tiny tumor appearing almost exactly where the first one showed up. I had surgery and very slowly recovered but it came back yet again. The third round involved a major surgery where my lower jaw and cheek were removed. I have thought this over many many times rethinking my decisions wondering if I had opted for surgery first if I would have gone thru it 3 times. But then the surgery would have been very involved too. All the while I did the chemo and radiation it was to avoid that big operation which I ended up having anyway.

My suggestion would be to take her to a large cancer center and get a second opinion. Dont hesitate, you want to make an informed decision rather quickly so any treatments can be started right away. Dont worry if it takes a couple weeks, but you dont want to wait a couple months to decide. I know how difficult it is to make this choice, Ive been right in your shoes 5 years ago.

Best wishes with everything!!!!!

I agree with Christine... A ccc is a good place for her to be treated. The surgery will likely be very involved but could take care of the worst of it, with chemo and rads doing the clean up... She may opt out of chemo and rads, after the surgery... But if she's in good health she may do well. We're here to help you both if and when you need it. Take care and god bless.

Still wrestling with decision altho leaning towards surgery. Interested in getting some idea of the recovery time altho I know everyone's different.Also wondering about dental aspects before surgery.

Recovery time for surgery can be estimated but it all depends on how her healing capabilities are. If she takes in high protein it can help her to heal faster. The surgery will probably be an extensive one. Has the doctor mentioned any removal of any of her jaw bone or will it only be part of her cheek. She will probably have some donor tissue taken from inside her wrist and possibly more tissue taken from her thigh to cover the wrist. As you can see this can be very involved and can take 6+ hours.

My surgery was a bit different where my lower jaw was removed and a titanium plate put there but pieces of tissue were transplanted from wrist and thigh areas. It took my team of ENTs and plastic surgeons about 10 hours for this operation. Ive seen others here with 12 hour surgeries for similar operations as mine.

Make sure you ask the doctor all your questions and find out all the risks and benefits of the different methods. Ive seen several others who have had their jaws removed which is quite a bit more involved than what your wife is having done. Those patients would recover anywhere from 3 to 9 months. Anyone who encountered complications took longer, 12+ months. If I would make a somewhat educated guess, I would say expect anywhere from 2 to 5 months for recovery. I am taking into consideration she has not had radiation which would make her healing much slower but it would also shrink the tumor. Its my estimate from seeing other patients go thru other major surgeries similar in nature. Of course the doctor should be able to give you a much better guesstimate.

Best wishes with your difficult decisions.

Some portions of jaw bone will. Using skin from thigh for rebuild. All nodes.Decision time tomorrow. Having no children and living away from other close family having concerns about my ability to provide the care needed. I feel for what you all have been thru and we wonder if at age 81/80 it's all worth it. But onward and upward as we go for our pm walk. Thanks

When your wife comes home from the hospital, she can have a visiting nurse check on her a couple times per week. This should be something arranged at the hospital. There also may be some home health aides who could come help. They can help her with simple things like bathing and dressing. I had visiting nurses weekly for 9 months. But I also had some major complications, most patients will be ok after a couple months. Most will stay 2 or 3 weeks in the hospital. Many will go to a rehab facility for a few more weeks to help them gain strength and to prepare them for being able to go home. The surgery is a big one and recovery is long but since your wife is in otherwise good health she should be ok with this. She hasnt had radiation yet so her healing should be faster than someone who already did radiation. I know its a huge decision to make.

I wish you both all the best with everything!

Still in limbo. Surgeon felt we needed to talk to medical Oncologist to discuss radiation/chemo option to surgery. Have session on Monday and then big decision. Thanks for all the input.

Tomorrow is last info day before decision. We wonder how much agony we are willing to go thru at 80 yrs of age. We all want to be healthy at any age but the cure may not help our overall health. I know we will do something but also looking at the least invasive options. Just venting. Any 80 yr old out here?

Hi Vandypaul

Going back to your first post which asked what sort of questions you should be asking. Everyone has given great advice about getting second opinions and giving you some idea of what to expect from the OC aspect but I don't see any advice around (or missed) addressing the Crohns disease.

My question to the doctors if I were in your wife's shoes would be to ask how treatment would affect her Crohns. I am thinking specifially of chemotherapy which affects the whole body - including the entire gastro-intestinal tract. Make sure your oncologists don't forget they need to take this into account when recommending treatment.

Good luck and let us know what you and your wife decide

Karen

I wish you all the best with your difficult decision! OCF does have an older gentleman who stops in from time to time. Look for posts by EzJim. He has gone thru heck and has shown such resiliency for a man in his 70s. He is a great example of someone who never gives up or gets discouraged, he just keep a positive outlook and keeps going. There have been others in their 80s but off the top of my head I can not remember specific screen names.

No matter what you decide, we will be here to support you with info and a place for moral support. Best wishes!

Decision has been made to go with chemo/radiation.Impact of Crohns is a little less than the 10 hr surgery option. Hopefully begin next week-go for mask fitting tomorrow.Hard choice and only time will tell. She finally fully understands the side effects after our meeting with thw rad oncologist Thanks for all the inputs.Our choice of Vanderbilt and their team approach helped tremendously in making the decision.

Vanderbilt's a great center - my husband's ENT trained there. It will be a difficult journey, but the good doctors at Vanderbilt are supporting it because there is a good chance it WILL be worth it. Younger people have us on physical strength and stamina, but age brings its own emotional fortitude, courage and patience. My very best wishes to you both.

Your post arrived

It was deleted as it took away from your thread responses.


Nutrition and hydration will play a huge factor in your wife's success with getting thru this easier. Every single day she needs 2500 calories and 48 oz of water. Do not skimp even one day thinking it can be made up the next one. It never happens. If you push for even more per day that is even better! Try to get her to enjoy all her favorite foods now as her sense of taste will be altered for a while.

So glad you have chosen a cancer center!!!!

Good Luck!!!!

Best of luck! You'll get through it. Hugs!

I will hold you and your wife close to my heart. You both are in for a battle, but I honestly think that the CCC doctors would carefully choose a treatment plan that is in her/your best interest.

Here's to the both of you having the strength to face each day and to find peace/comfort whenever possible. You both can do this together! You are fortunate to have one another.

Take care and best wishes,
Kerri

Well we finally got underway. First of 9 infusions was Thursday.Taxol and Carboplatin. As of today no obvious signs of any side effects. Actually doing well. Current treatment plan is 9 weeks of chemo(if she can take it) followed by a week off and then 7 wks of radiation/chemo. Getting ~2000 calories a day in her and Crohns has stayed calm. Dr emphazized the plan is subject to change as we move along. Actually has gained weight over the last 2 wks. Still exploring other food options. Trying to get her from being too "high" right now.

good luck with the treatment which is very similar to Alex's treatment. We might be able to help out with tips and tricks to manage side effects as you go through. I am entirely ignorant of how Crohns might impact on side effects but will be here to support nevertheless.

My Tx plan was similar and it is hard but she can get thru it, hang in there and best wishes in this fight!! Semper-Fi Bob

Second infusion and no side effects. Wll have as blood tranfusion this week as well as an iron infusion which is Crohns related.see no decrease in the tumor size. Wonder if its working. Hope no surgery option was right.

Gone through 3rd and 4th sessions. Only minor side effects_swollen feet,tired. Want some advice from you veterans. First two sessions had little problem with iv's.Last 2 were terrible-no good veins. Last week 8 sticks between lab and iv. Have 11 more to go. Will drinking morenwater as suggested do the trick or go for a port. Thanks.

Hi, paul - are the doctors recommending a port? Glad to hear that the side effects are not too bad.

Paul, as Maria suggests, sure sounds like your wife is a candidate for a port. If not, being well hydrated does help, but not sure she can get enough to overcome the issues with the needle sticks. OUCH, ask the docs about it.

One of the things I wish I had gotten during my Tx was a port but by the time I really needed one it was to close to the end to bother. I'd go for the port.

Happy BD Bob.

The port!! Makes everything MUCH easier.

Today was sixth chemo. Last with the sticks. Had luck with the fifth but subsequent iron infusion did'nt go too well. With ten more chemos and a few blood transfusions not to mention the mthly iron we finally took everyone's advice. Monday she gets a port. Also chemo has already really shrunk the lymph node swelling as well as the cheek. Onward to radiation in 4 wks

Please add a Signature Line so that readers can quickly see all the particulars. It really helps anyone that wishes to respond. See mine as an example.

It's hard but you'll get through it.. Thinking of you... And a port is a good thing!!

Thanks for adding her details and we all wish you both positive outcomes. We will be here to help you 24/7. I wish they would make the Port a standard proceduce for OC patients getting concurrent chemo/rad. I know I could have used one.

Today had an abrupt change in treatment plan.Seems her WBC dropped so no chemo today.Last 3 chemos cancelled and radiation/chemo starts Monday. Swelling of lymph nodes gone but cheek swelling not as much. Dr thought it best to move on. Whole new ball game. Port surgery went well and been used for blood transfusion.

This is a difficult road for you both. Many people have their chemo altered due to the low WBC count. Hope all now goes well with the radiation. Many here will offer you advice as you need it.
Take care and time for yourself too.
Tammy

We are here for you so keep us posted.

Ending we 2 of chemo/radiation. Have had a hard time convincing my lovely to water up. I think we got her attention yesterday. Typical side effects-dry mouth,no taste,fatigue. Have been to physical therapy,food guru and swallow spec. With all the rinses, pt etcher days are busy. Today marked a turn in her attitude. Started using the pain med and forcing herself to eat. Since this al started she has only lost 1 lb----110to109.She wants to know what some of you veterans found most tolerable to eat. See,progress. Thanks for all the help. Five wks to go.

Here is a list of easy to eat foods. I found chocolate milk very good and also liked drinking yoo-hoo all thru my treatments. For some reason I found it to be very soothing on a sore mouth. Foods right now will be about texture, the smoother the better. Canned peaches were a favorite of mine.


Easy to Eat Foods

Great work on only losing 1 pound so far. Keep pushing the calories and nutrition. Thats what makes the difference in how easily someone gets thru this. A minimum of 48oz of water every single day is mandatory or she can face dehydration. It takes work and as time goes on things get more difficult so hang in there!

She sounds like a fighter! I'm in your corner! You're doing a great job, but take some time to take care of yourself, as well. Perhaps some friends or family can give you some much-needed respite?

Take care and continued good luck to you both,
Kerri

Sounds like she's doing well... Hugs and keep on keeping on..

End of 3rd week. Dr put her on plan of 5_6 ensures a day and whatever else she will eat. Also topical pain for the tongue sore and a fentanyl patch. Wed and Thur she was a zombie and slept continuously. Took her off patch Fri and seems better. Pain minimal and hydocodone works. Doing good otherwise except the eating part--nothing tastes good. What did you guys do to try and overcome that mental block? Four more to go. Thanks

Awesome and good luck! She'll get through it,

Well our chemo and radiation ended this week. She made it mbut now feels worse than ever. Mucous is killing her.Had done so well with the ensure and water and now not doing either very well. Is on a fentenyl patch(12.5) which seems to keep her in a confused state. Magic mouth wash for the sores. Only lost 6_7 lbs over the 13 weeks. Hate to have her backslide after doing so well. Any mucous hints?

Wow! Your wife really did do well with only losing 6-7 lbs over the 13 weeks. Usually after radiation ends, the next couple or three weeks are the very worst because the rad keep working, but things get better after that and they should for your wife, too! Magic Mouthwash helped my son a lot and later when the MM no longer worked as well he went to an OC mouthwash at Walgreens. Keep updating us and let us know how you both are doing.

Almost everyone getting concurrent chemo/rad ends up having their worse time the few weeks POST treatment. That's very very normal. Doesn't mean it's pleasant but don't think something is unusual. The thick mucous is the last stage before she will encounter what we call "dry mouth". It can last for several weeks. Remember each of us can be different. Some use soda water, some have it so bad they need to rent a suction machine. I walked around with a styrofoam cup in my pocket and spit in it all the time. At night I would wake up w/ a mouth full and barely would make it to the b/r sink. Sometimes it triggered a gag reflex and I would vomit. This will pass but then she needs to be prepared for the dry mouth.

Seltzer water worked for me to cut the mucous the first time.
I found that the plain generic Safeway brand in the small cans worked best. The big bottles lost their fizz after opening and without the swishing bubbles did not cut thru the mucous. Although they are all carbonated water, I had issues with club soda and tonic water which burned my sores. Seltzer contains no added ingredients or flavorings, club soda contains additives such as table salt, sodium bicarbonate, or potassium bicarbonate and tonic water has quinine and sugar.
After the recurrence, the mucous was so bad, the hospital arranged a rental suction machine for home use.
Can't hurt to buy a six pack of seltzer, you can always drink it if she does not like it
Charm

Keith
In LONDON I was given a Nebulizer on the NHS it often is used for athsma it vapourises A sodium chloride amputet, it improved my mucus 300% it is better than mouth wash and pain killers, good luck.I stick to water and take food through PEG any food in mouth just coats tongue and turns rancid.I will try the seltzer tip.
I too have a couple of weeks of radiation left and I am focusing on the future all this being worth it.
Touch wood, fingers crossed, and god bless anyone having this treatment.

Well after all the chemo and radiation which ended Aug 9 her tumor came back with a vengeance. Today we were told basically inoperable with 3_6 months.Age plus Crohns to tough to overcome.Waiting now for more info from Oncologist for any cllinical trials that might be available.

Oh no. So very sorry to hear this. There really are no words other than those, and they never seem to be enough. We are here for you and sending virtual hugs your way.
Are they keeping her comfortable with pain management? Seemed like she had a bit of a time with the patch.
Please keep in touch,
Kathy

Yes please keep us up to date - so sorry. Usually the stop gap is surgery. hope they have a trial available.

Contact Hospice asap.

I am so sorry to read of your wife's reurrence. Is it possible to get a second opinion at a major cancer center?

Really sorry to hear this. Hope you get some quality time together. I also think that Hospice is a good option to explore.