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New to this Board- A couple of Questions

fbcuthguy
Posts: 15
Joined: Feb 2010

I was diagnosed with SCC w/unknown Primary in Sept. 09. Had two triple endoscopies with multiple biopsies as well as a tonsillectomy with no primary found. Just the lymph nodes it had spread to. I finished 9 weeks of induction chemo with taxol & carboplatin 3 weeks ago and will begin chemo (cisplatin) w/radiation on Monday.

Because of the unknown primary, I will be receiving a much wider coverage of radiation: Basically, everything from the sinuses to the throat. The RO insisted I have a PEG placed before starting treatment. That has been an experience, but I guess I'm starting to get used to it.

My questions are: I am supposed to have amifostine injections before rads. Has anyone had them & do they help at all?; and, I've heard nausea & cisplatin go hand-in-hand. Is this an immediate thing or does it take time? I made it through 9 weeks with no nausea. I'm a little paranoid about dealing with it now.

Thanks for any help you can give,

Rob

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

I'll be following along on this one. One 3-cm mets SCC lymph node removed from my neck. Still searching for the primary. PET-CT on Monday. I'm betting my treatments will be similar to yours. Also curious about nausea, side effects, and effectiveness of amiphostine. A cursory internet search of amiphostine shows that the doctors seem to be all over the map on this one. Some believe it is very helpful, some seem to be saying that it doesn't really change things. Hmm. I definitely have the nausea paranoia (wouldn't call it fear, exactly). Inspirational quote of the day... "When you learn to love hell, you will be in heaven." Perhaps its time to embrace the nausea.

regards,

Deb L.

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

My RO swears by this stuff. He put it to me this way; Without amiphostine treatments about a 40 to 50% return to normalcy. with treatment 70 to 80% normal salivary function. I trust this doc greatly and he has answered every question I have put to him and he has taken a great deal of time with me to help calm my fears. Just gotta say he is great. Given his prognosis I have decided to have the amiphostine. The problem with it now is, at least here in Texas, it has to be given in an I.V. No more shots. This is the approved "administering indication for this drug. It is expensive, and this is one way the insurance companies are trying to discourage it's use. Makes the visit to the RO at least 1hr instead of 10 to 15 minutes. I also did some research and I think that in my case, Primary Right tonsil, the benefits will outweigh the side affects.

All the best
Steve

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

I was given a prescription for Emend, it's a capsul and I'd take it just before my big sessions of Chemo (when I received three at once (Taxotere, Cisplaten, 5FU)). It has a stronger dosage the first day, then you take another each of the following two days after chemo. They also gave me Azmet and Zofran I think for times when I might need something.

I can honestly say that I never got sick other than one time, and I'll explain that one. Although I never got physically sick, I could get nauseaous if I thought about it. You know when you eat somewhere or something that makes you sick. Then when you think about that food item or restaurant, just the thought kind of makes you nauseaous. I'd get that feeling anytime I started thinking about my next session after I'd have a week or so off.

Anyways the onetime that I got sick, I was with a friend and he kept talking about my treatments, how it felt, what was it like, etc., etc...LOL. I stareted thinking about it too much and got sick, then I told him to shut-up..LOL.

My Oncolgists was awesome, she told me no matter what I felt or had problems with, let her know, she had something fro it....and she always did.

I didn't have problems with sickness, I did have heatburn and indigestion, she gave me Protonix and that helped. I also had or would get hiccups, forgot waht she gave me for that, but it helped. Anxiety about wearing the radiation mask, Xanax... Pain from the radiation tearing my throat up, numbing solution they called Larry's Solution #2, Percocets, Liquid Oxicotin, Hydrocodone, Roxanol or Liquid Morphine....all of these one time or another.

It's not really that bad and nothing you can't handle. Just stay positive, keep focused on getting better, maintain your since of humour, keep faith, family, and friends close to you.

Stay hydrated though all of your treatments....

God Bless,
John

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

Welcome, this is rather long, but hopefully will give you some knowledge from my experience at least....

I was diagnosed last January 2nd with SCC also. HPV related, it was primary in my right tonsil and a secondary lymph node on the same side of my neck slightly behind the ear and lower.

I started first with three 3 week cycles of Cisplatin, Taxotere, and 5-FU on Mondays. The 5-FU was administered via a pump 24/7 ending on Thursday night. The following two weeks were recover time.

After that nine weeks, I started seven weeks of Carboplatin every Monday and 35 daily doses of Radiation. Each day before the radiation I was injected in my abdomen with Amifostine to help retain some salivary function (not sure how well that actually worked).

I completed my treatments the 19th of June 2009. My first PET scan in the later part of August showed no signs of the cancer, no signs of the tumor.....maintenance mode now with regular visits and check-ups every 6 - 8 weeks.

I also had Amofostine injections 15 - 30 minutes before each of my 35 radiation exposure. I do believe it helped me as I do have some salivary function, and have actually noticed an increase the last week or so (I'm seven months post treatment). I also didn't get any of the thick ropey mucousous that I've heard some go through.

I have read (especially from several years ago) where a lot of people had sever reactions, most not completeing the regime'.

I did start having reactions around the 31st day of receiving them. I wasn't sure at first what it was because I hadn't been sick or had any problems until then. My reaction started as sever fevers or chills. Two nights in a row, my temperature went to 102.8. Which is really a concern as they had always told me to call in 24/7 if my temp rose to 100.5....

Those two days were Thursday and Friday, no fever or treatments during the week-end. Monday evening a few hours after the injection and radiation, my temperature went to 96.3 then to 102.8. It actually hurt throughout my chest, I was concerned of a heart attach or something, my arms actually ached. I told them after that I wasn't doing anything else until the figured out what was going on... So we stopped the Amifostine and I never had any other problems and fisnished the radiation a few days later, no problems after either.

I can't really say for sure that they helped as I only had them, but I do feel they helped me retain more saliva than if I didn.t I also don't have the thick white saliva anymore like I use to at first.. My radiaologists never brought up the subject, my oncolongist did. She was concerned with getting the thick mucoucous.

It did tend to make my injection sites rashy. My injections were in my abdomen circling my belly button pretty much. The area usually had about a 2" rash for several days. Eventually that entire area became really dried out and scaly, took a month or two after finished for that to go away.

They did also check my blood pressure daily before the injection. If it was 100 or lower I think, they would not inject that day. I never had that problem...

I wished they would have mentioned the Benedryl and Tylenol help relieve the reactions, might have saved me some grief.

They mix it just before you get injected. It's a dry white powder and depending on the nurse they would mix it differently. Some used Saline, others used other solutions....and yes, it did sting for a good 10 minutes or so.

God Bless and Good Luck,
John

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Thanks, John.

I'm filling up a binder with all these ideas. I'll be following up when the time is right.

Deb L.

Hondo's picture
Hondo
Posts: 5851
Joined: Apr 2009

Welcome to CSN we are glad to have you here with us but sorry you have cancer, but what better place to be then with others who have been there.

I had to have radiation treatment twice once in 2003 and then in 2004. The treatment I took in 2003 I was giving amifostine with and did do very well through treatment. The treatment in 2004 I was not giving the amifostine with and still did well. So to tell you the truth I look at it this way it does not hurt to have it, but it can bankrupt your pocket book as it cost me $600.00 a shot three times a week.

One last thing, for someone who has had radiation twice I still have about 50% of my salivary glands working, so just maybe the amifostine does work.

Take care my friend

fbcuthguy
Posts: 15
Joined: Feb 2010

Thank you all for your input. There are still times I feel completely in the dark about what's to come, but forums like this help with answers & questions I probably wouldn't have thought to ask!

I appreciate your answers & I know that I will be back with more questions as I go along.

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

No problem, glad to offer anything I can to help make it easier for you.... Everyone is different and reacts/responds differetly, so we can only speak of our own experiences. You'll quickly learn what works or doesn't for you when the time comes.

Know your body, what it's going through, and continuously communicate with your doctors and professionals. Especially the nurses in the chemo center while you are having the chemo. They've seen it all and can be a huge asset to you.

Rob, your chemo regime is a little altered compared to mine. I had the Cisplaten, Taxotere, and 5FU for nine weeks on a three week cycle. Basically Cisplaten and Taxotere on the 1st, 4th and 7th Mondays and the 5FU throu a pump for that week. This gave me two weeks to recover. I had no nauseau (with the Emend and Zofran).

During the concurrent CHemo/Radiation seven week period. I just had Carboplaten every Monday and the Amofositne and Radiation every day (M-F)..35 of them.

I was told that the Carboplaten was basically a less potent derivative of the Cisplaten. So it's different for me to see how they swapped the Carboplaten and Cisplaten around for your regime'.

John

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

i too had an unknown primary, and they really radiated me. (9 stops, almost 30 minutes of radiation daily for 30 treatments) when i had my modified radical neck disection they took one of my salivary glands, and 23 lymph nodes, three of them were cancerous.

when i went thru radiation i would get the shot of amiphostine about 30 minutes or so before table time. the biggest problem for me is that i bruise like fruit. the shots were also very painful to me. they burned like heck going in. the backs of my arms were just one big black and blue the whole time thru radiation. they told me to take tylenol and benedryl before coming in. as amiphostine can spike a fever, have you get a rash (that happened twice) and effect your blood pressure. they would always check mine after radiation.

i still do not have any saliva and i stopped on 5-15-09. i cannot imagine what i would be like if i did not have those shots. best of luck to you.

Hondo's picture
Hondo
Posts: 5851
Joined: Apr 2009

Sweetblood, Even through you lost one of your saliva glands by now you should be getting some of your saliva back. I had radiation twice to the head and have a little over 50% of mine back, I just need water when eating or during a hot day. I will start thread for you on it so you can see what others are doing to help there saliva glands to start working again.

Take care

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

I didn't get amiphostine before, or at any time. Compazine was for the nausea, and was not a major problem. My treatment involved getting radiation in 20 places/session for Nasopharyngeal with unknown Primary, while also getting Cisplatin and Flourouracil via 96-hour pump durations in weeks #1 and #4. It's always been my opinion that the interaction between the chemo and radiation is what did the number on my mouth, because my mouth was recovering over the last couple weeks of treatment- when I was only getting radiation.

The worst of it for me began at the end of week #1, hours after the chemo pumps were unhooked. I didn't have Magic Mouthwash, or morph, prescribed, and didn't get for a couple days after things went south on me. Be advised- get them ahead of time, if your Dr. thinks they may be necessary.

The dry mouth hits most all of us. Hondo has some excellent advice, as does Scambuster, and many others. I use Biotene, brush my teeth twice/day with Prevident, and drink plenty of water and 7Up, and diluted Cranberry juice.

Believe.

kcass

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

Sweetblood hang in there and don't give up hope on it returning. I've read of others on various fourms that have regained a lot of their salivary function out as far as 12 - 15 months.

I eneded treatment around a month after you and I have been pretty dry mouthed since. Especially at night and with this winter and the heat being on in the house.

I have actually gained more saliva this last few weeks though. For a long time my spit (for lack of a better word) has been very thick and white. I couldn't even get it out of my mouth hardly.

Anyways, for the last few weeks I can actually think about it and on several occasions can produce some regular clear slipper saliva...LOL, what a conversation to be happy about. But I know those on here can appreciate that LOL...

It's not constant, but it is frequent. I've always been a big bread eater. Well of course with no saliva, that's nearly impossible to eat. The more I chew the bigger the lump and more water....you know the feeling.

I was actually eating something this morning, and noticed I was eating bread with it and better yet, with no water and I was swallowing it. I didn't even realize it as I was watching the Olympics...

So, anyways, keep the faith, this is a long road of recovery that we have.

John

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Wow, John! You ate BREAD! So jealous....really. lol. I tried like heck to get a bite of stuffing down last night. No dice. It would be so cool to eat pizza and a sandwich some day. Ahhh.

I am haning in there.

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

You'll do it I'm sure...it just takes time. I noticed that I'm getting use to my new taste more and more. It seems to improve every few months....

Keep the Faith, God Bless

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