Good morning, Debbie. Thanks for you post...this site has become almost an obsession and I never fail to come away feeling more hopeful for a bright future. We do rely on prayers - ours and those that others are good enough to offer - to help us through what I can tell from all of you is going to be a real battle. Ed is always good to remind me to pray for the doctors - - -what would we do without them?
Today is a good day! I am so very happy that this morning Tom has no queasiness, no discomfort of any kind. He ate slowly, but a good breakfast - including fresh juice from our new juicer! We plan on making a stop at the farmer's market for some organic goodies to juice this weekend. I'm learning a whole new way of cooking, and most of what my Italian heritage has taught me is going right out the window!
How is Dan doing now? Has he put on any of the weight he lost? Tom is already at 140 after only one month and I am in a constant state of concern over that.....
Must get housework done so we can go play today before the bad weather from hurricane Charley gets here..
Nicki

Nicki -- glad to hear Tom is doing better... I can relate to the queasiness, and can't wait for my latest bout to subside...

You guys sound a lot like us. We bought a juicer a few months ago and have been pursuing the best organic "goodies" to eat and juice as well... Every little bit helps... I do think diet has a big role in propping up the body to fight well and live healthy... Of course, right now getting anything down at all is a major victory. I did try some pizza this afternoon for lunch -- great tasting but too greasy...

You asked me earlier about why I didn't have chemo the first time around with radiation. At that point, I was even on the border, according to my docs, of even needing radiation at all (T1/T2). They told me if I endured radiation alone, my chances of getting cancer again would drop to something like 5 percent. Of course, they didn't radiate my whole neck and that was the culprit of this latest bout.

Apparently, there were some recent study results (within past few months) that supported using chemo and radiation together to help decrease rates of recurrence and increase survival. It's no fun but I'm all for living longer and lowering my risk of a "three"-currence...

Give Tom my best and tell him to keep up the eating and feeling better!!

Nicki-

I haven't checked the site for about a week, so I'm sorry I haven't responded sooner. This is the most amazing website in the world and I'm telling you I don't know what I would have done without it. I agree with everyone here about the advise to make sure he gets the PEG tube. It was what saved my husband's life. He ended up loosing 30 pounds total but it is now one year post diagnosis and he has gained it all back. If you are interested in knowing the special nutritional fluids we put in the tube feel free to personally email me...the doctor told us quite often to continue doing whatever we were doing because all his blood tests were coming back good and he lost his weight slowly. I think it is important to maintain nutritional balance so that he doesn't end up in the hospital for malnutrition or dehydration.

About the "attitude" thing. Yes, this is very very hard to go through. When my husband first saw his medical and radiation oncologists the first thing they told us was..."it can be cured" but, "it is going to be HELL !". About the 3rd week of treatment (he received radiation and chemo at the same time- surgery is what discovered the malignancy, so that was already done) the HELL began. There were times when he didn't want to go on. We are blessed with wonderful family and friends...because I was never afraid to say "yes" to their offers of help I think it helped him realize just how much he had to live for. He didn't go on anti-anxiety meds until about 3 weeks ago...he was stubborn...but they are doing wonders now. I went on the meds 3 months after diagnosis...it really helped me get some sleep and do what was necessary for my husband as well as myself.

Don't forget to take care of "you"! This is one of the biggest things that we tend to forget. Your husband needs you, but you won't be any help if you don't take time out for yourself. It did get hard for my husband to watch me eat...so I made lunch dates with girlfriends and family ...this was my time away and he didn't have to watch me eat.

I also print up all the posts for my non-computer literate husband and they really lift his spirits. It is amazing what knowing "you aren't the only one with this problem" can do for your recovery. There is hope out there and tons of people on this site to prove love and prayers work wonders.

You are in my prayers always...and feel free to personally email me if you have any other "caregiver" questions.

Lorie

Hello, Friends.
We have, we think, good news.
Tom's had his second Cisplatin infusion (Wednesday) and the doctor was visibly surprised (and pleased) with the diminished size of the tumors in the lymph nodes on the right side of Tom's neck He has moved the first radiation session up about 2 weeks, and we are beginning that on Sept. 7. I'm anxious about it, but Tom is very excited to be hitting this thing on a faster track. I see that some of you did not have surgery after chemo/radiation - Tom is wondering if going that extra step is any kind of 'insurance' that all the microscopic devils have been killed....? I am seeing that some of you did not have chemo and are working with recurrence situations.
Perhaps the use of chemo with radiation is too new to have a 'history,' but I'm wondering what the numbers might be on recurrences in patients who used both procedures their first go-round.

What is up with the hiccups? Almost immediately this time, he's spending a better part of his day with them. Last night they woke me up!

As always, thanks for being here. I've learned so much, and it helps to be able to talk intelligently with the medical team - - you all should be able to put PhDs behind your signatures !
Nicki

Hello Nicki,
My husband is age 56 and had Stage IV base of tongue. He had chemo and radiation, Cisplatin/5FU, 35 radiation treatments, no surgery. His tumor also visisbly shrunk after just a couple of weeks . He had intractable nausea..suppositories worked best for him. Part of the time he was drugged with anti-anxiety meds just to get thru radiaton and, I watched on the closed circuit to make sure he did not start heaving, no fun when you are masked up! If he can consume max calories now it will help . One thing that helped us was THE DRINK.
1 TBsp. Ovaltine
1 tbsp Carnation Malt
1 pack Carnation instant breakfast
1/2 cup half and half
1 cup whole milk
2 cups ice cream...1350 cals and quite tasty!
I have been where you are ..its scary..take the drugs.
Try and keep him out of hospital, nasty place and full of germs .. keep him hydrated.
No point in addressing what if`s..let us know what you are experiencing and we will help. Pete recently had his one year PET and got the all clear. it`s beatable Honest!!
Take care
Marica
Dx 4/03 finished treatment 8/03 eating just about everything and feeling great

Nicki,
I had the worst hiccups! It was pure torture and nothing really worked - steroids, brown paper bags, holding your breath, people trying to scare me, etc. - sheer brutality. All I can say it that it eventually passed.
Actually in regards to your comment about chemo and radiation. They recently did a study that stated a 14% higher five year survival rate when using a combination of Cisplatin and radiation (that's up from the 6% rate in the previous study). They are always looking for a synergistic effect between the chemo and radiation.

I probably mentioned this already but my tumor had completed melted by the third week. It was not visible on the CT. I have also learned that certain tumors are also more responsive to treatment. Mine was a polypoid, polyp type of tumor and the doc said they respond very well to treatment (particularly radiation) as a rule. They were pretty amazed that as long as it had been there it was still moderately well differentiated.

One of my worst nightmares was puking in the mask but it never happened. I never had to stop treatment.

I took the antianxiety stuff just to relax a bit more. I do have a fair amount of experience with those compazine suppositories...

"The Drink" sounds a lot like what I was taking but everything tasted like sh*t no matter what is was. Strangely enough I found that I could still taste coffee flavor so Hagan Daz coffee ice cream and carnation espresso flavor instant breakfast worked pretty well. Unfortunately you can only get the espresso flavor in the multiflavor packages and the strawberry stuff was awful. I ended up giving the local convalescent home a whole lot of unused packages.
I put Nestles Quik in it as well. I still lost over 60 lbs. I had to be careful that I didn't make the drinks or milkshakes too thick.

Nicki,

I had the hiccups for almost 24 hours after my first chemo. They started real fast and just hung on. I was given Baclofen 100MG tablets and they did the trick. As I understand it the hiccups are just short of throwing up, so they are a common problem.

Glenn

Nicki , Pete ended up with Thorazine for hiccups it worked beautifully.
Marica

Thanks for the hiccup ideas! This is ridiculous - and I know it is aggravating him!
He's having a queasy day, and they aren't helping his outlook for the rest of the weekend

Marica - thanks for The Drink recipe! What a way to put on the weight! I'd best not even taste it !
Gary, you mentioned the tumor being 'well differentiated.' Tom's report says "poorly differentiated," but I don't really know what that means, and I can't recall the doctor talking much about it. ?????

Thanks, all
Nicki

Nicki,

The term "differentiation" is used to describe the structure and rate of growth of tumor cells. Well-differentiated cells tend to resemble normal, mature cells and grow rather slowly. Poorly differentiated cells don't have the same structure as normal cells and tend to grow faster. (I'm paraphrasing from a glossary on the NCI website -- you can find it under "Other Resources" on this site, listed in the Medical Databases category.) I've found it helpful many times for looking up the technical terminology that doctors toss around during the diagnosis and treatment process.

Cathy