New to this Board- A couple of Questions

Also wondering...
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.

Been There Done That
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

Skiffin16 said:

Been There Done That
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

Helpful information!
Thanks, John.

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

Deb L.

amiphostine
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 said:

Saliva Glands not working
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

amiphostine
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 said:

Saliva Gains
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

wow!
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.