Hello Everyone,
Its been a while since my last post, but here is a quick rundown of whats happened lately. My last post my father had been put in the hospital because he was so dehydrated and stayed there a week since then he finished his treatments with radiation and chemo. He did a total of 80 radiation treatments.
One of my main concerns was i thought a PEG tube was necessary in his situation, but none of the doctors would listen to my concerns or my fathers concerns. Anyways he was weighted yesterday at the chemo dr and he now is 106 lbs. My goodness I just don't understand why the would let him go so long like this. Any ways I have insisted to my dad that this Tues I am going to the Chemo Dr with him (he has to go 2x a week just to get weighed) and I'm going to push this issue with the doectors.
Also, something that the ENT doctor said to us which is kind of unsettling to me is " If my father continues to lose weight but getting the calories then we have to look into the possibiliy that a second cancer has developed.
He is scheduled to have Cat scans in a couple of weeks. Is that proceduce to wait a month or so after treatments have stopped to do these test?
He is still in quite a bit of pain. I have to say he has been a real trooper through this.

Any suggestions or incite in the matter i would appriciate

Hi Kelly, I don't quite understand what the doctor meant about your dad getting a second cancer.It is always very important to get enough in the body during treatment to fight the battle. I remember during my radiation, my oncologist admitted me to hospital and suggested tube feeding when I lost 10 pounds (of course the figure may vary from different patients because I wasn't that heavy to begin with and 10 pounds means a lot to me.) It was myself who begged him to let me try eating. While I felt lucky of not having a tube inserted and be able to take enough nutrients I needed, you really have to be pushy and discuss your concern over your Dad's weak body to the doctors. Hope everything turns out fine.
Karen.

Hi kelly
I was wondering where your dad is receiveng treatment. My sister has been going to Walt Disney cancer institute in Orlando. She is doing wonderfully now. But during treatment she would also get so dehydrated and the peg tube was suggested ,almost as a punishment, if she did not eat. She did not get one, but I feel she would have faired better during treatment if she had. She lost much weight, but looks great and feels really good too now a year later.

Hi Molly,

My father received his treatment in Fort Pierce. There are some days he fells really good but even on the good days he tells my he feels like he is starving to death. On other days he gets really bad headaches and is dizzy which i assume is probably because he is hungry. I mean I think if i go without eating for a day or so I would feel dizzy and weak, I can just imagine how he feels not being able to have food for months.

Hi Kelly,

"Also, something that the ENT doctor said to us which is kind of unsettling to me is " If my father continues to lose weight but getting the calories then we have to look into the possibiliy that a second cancer has developed. "

From what you are saying - your father is NOT getting the calories he needs, from either food or a supplement like Ensure. So, while I understand what he was saying (because I am a person that continued to lose weight and had the cancer spread) your father's weight loss is not unexplained. SCC can spread to other parts of the body if not caught in time.
As far as the CT Scan mine was a month after I finished radiation and I was told it was to be used as a baseline for continued monitoring.
You might ask when they schedule the CT Scan what area they are scanning and if they are going to scan the chest, abdomen and pelvis as a precaution?

Good luck and take care,

Dinah

Hi Dinah,

My father is actually getting the calories because i bought him a weight gain powdered from the nutrition store which has 760 calories in a 16 oz. serving plus he adds an ensure to that as well. He is drinking sometimes 3 of these a day. So that is close to 3000 calories a day. I would think that is alot of calories and he would gain weight, but hes not. Like I said last week he weighed 111 then tuesday they weighed him agian and now hes 106. At this point I am frustrated with the doctors because they have ignored my feeling and my fathers. A month a ago i asked one of his doctors what the he thought was going to happen with my father because truthfully I really thought I was watching him die right before me and that devestated my and the doctors words to me were " You are asking my in appriopate question". It saddens me to think my father has gone through this and he doesn't know if he will live another year. Did I mention he is 51 years old. I have been his sole means of support emotionally, physically and financially.

Thank you for everyones replies.

Hi Kelly:
Was just wondering if your father sees a nutritionist as part of his care team. Going through my treatments I saw one once a week at least. She kept track of my nutrition and reported to the surgeon and radiation oncologist, she was pretty much in control of my nutrition.

Mike D.

Diagnosed 06/200, w/Laryngeal cancer, 1st stage

Kelly,

You haven't had it very easy lately, but you seem to be handling things pretty well. Good for you. I firmly believe that it is harder for the caregiver most times than the patient.

You take care of yourself too. Your father is very lucky to have you be there for him.

Dinah

Hi Dinah, you mentioned your continuous weight loss and the spread of cancer to another part of body. I wish to know if weight loss a major indicator of metastasis. In your case I know it has spread to liver. What other symptoms did you develop? Even when I have CT scan , MRI and ultrasound they only focus on the head and neck area. Whether it has spread to elsewhere cannot be detected early. I have told my oncologist about my concern and he just said that I need not worry too much. They will perform tests if I feel something wrong. So what is that something?
Karen.

Hello Karen,

You know I never gained my weight back after radiation, then continued to lose, not quickly but I figured I had heard so much about after effects I wasn't real concerned. I finished radiation January, 25 2002.

I had a few really bad bouts of gas. To the point at one time I even had chest x-rays to insure it wasn't my heart. Also, my finger nails were turning whitish and shredding. (I have always had strong nails) This is one sign of liver problems.

In September I looked down and saw that my right side was swollen. Above the abdomen below the ribs. I have since learned this is where the gall bladder and the liver are. Sure there was some pain but in my case not great, just annoying.

Then I read on the boards here, an answer Brian posted about spread to aerodigestive system and I asked what he meant. After finally finding a doctor and after every test you can imagine including a full body bonescan, they found the tumors on the liver and my ribs and spine.

The other areas are small so the main concentration of the scans has been the liver. Since I am being treated systemically(sp) they feel it should take care of the bones, too. And these doctors haven't been wrong yet.

Hope I was able to answer your question. I will add that the first thing they did was a blood test. Evidentily most times it will show in the blood. Not mine.

Take care,
Dinah

Thanks Dinah for your information. I am wondering if it is sensible for me (despite not having any symptoms)to ask my oncologist to perform bonescan and tests you mentioned. I am lucky to have a very considerate oncologist who always listens to patients' concern. Last time when I told him about blood in the mucus, he immediately arranged a chest X-ray for me and when I talked about thyroid problem, he immediately had a blood test for me. I am on a bi-montly medical check up now and each time I have blood test for tumor marker.I don't know how useful this is to detect cance cells. Would like to hear advice from anyone here.

Dinah, Did you every have a panendoscopy procedure done on you? If so, wouldn't this procedure have cought anything if there was any cancer spread through the aerodigestive system? How are you doing now and what are the doctors doing to treat you with these new tumors? I wish you all the best and hope things get better for you real soon.

HI Donnajean,

When they were trying to determine the cause of the swelling they did (in order)Blood test, ultrasound, CT Scan, MRI, Ct Scan with biopsy (while being scanned they put a big needle into the tumors. (and give you the equivalent of a couple of margaritas to keep you calm.)

Due to the size of the tumors (largest was 3 1/2" - everything is bigger in Texas) the prognosis was not good. Surgery was out since the multiple tumors covered too much of the liver there wouldn't be enough to regenerate.

I am being treated at Cancer Therapy Research Center in San Antonio. (not to be confused with the place that advertises) - Luckily enough they do more clinical trials than any other place in the US. (wish I would have gone there first go around)

They have a clinical trail right now for people with SCC that have had very little or no chemo. I fit since I had no chemo before. So I got in the trial and this week will be my 6th treatment. My treatment is a combo of carbo/taxol and the investigational drug; which are two pills I take daily. All of my scans are of chest, abdomen, and pelvis. As of the last ct scan my tumors have shrunk to 25% of their previous size. Cool huh!!!

In another 3 weeks I will have another ct scan and then we will decide what the future holds.
And yes with the tumors shrinking my stomach now has more room. I've gained 5 pounds!!!

Take care,
Dinah

Alright Dinah!!! Way to go! So happy to hear that the tumors are shrinking....25% is quite a bit, and I'm very glad for you! And the fact that you gained back 5lbs. is great!! Every little pound helps...and when a person has cancer, that's not always an easy thing to accomplish. It sounds like you are getting good care at the place you are going for treatment, and thank God for clinical trials too...they literally can be a lifesaver. May I ask what kind of cancer you have as far as the primary site? Was it diagnosed at a later stage? My husband's doc said he gives him a 40 - 60% chance of recovery from this, or as he put it "middle of the road". He told my husband that there is always a greater risk of recurrent cancer, even if this is treated successfully. It's so overwhelming at times. Anyways- good luck and continued success in your treatment - and let us know your progress, tell me when those tumors have gone down 50% or more!!! Take care.

DonnaJean,

My original diagnosis was SCC of the left tonsil with neck mets. Once I found OCF board I called (after treatment was through) and asked what stage I had. They said 2, but from what I have read they were wrong from the beginning. (when I started with the current docs, needless to say I was a 4)

After radiation, I had both my ENT and my oncologist pat me on the head and tell me I was going to be just fine. (There are more details about my original treatment under the survivor stories.) No one ever mentioned the true statistics to me.

And; I need to clarify my tumor statement (with good news) They had shrunk 50% in 3 weeks. Then they shrunk more the next 3 weeks. That put them at 25% of their original size. Those bad boys are just fading into the sunset. Can't say I'll miss them.

You just keep up being the positive force for your husband that you are. Although it's scary to learn so much, it also makes you the best thing that could happen to him. You know what to expect, and what to ask, and when something just isn't right...

Trust your instincts...
Dinah

Hi Dinah:

Maybe the tumors weren't all bad boys...instead, I like to think you may be just too much woman to handle!

Keep up the good work!

We're pulling for you!

Kim

Dinah - That's great news again! That's amazing and wonderful to hear. You keep up the great work and get some of those pounds back on too, ok?! As those nasty tumors get smaller and smaller - you gotta keep getting stronger to give those bad boys the one-two punch they need!! Take care and keep us posted on more encouraging news.