Be very cautious and careful with the amifostine -- follow *all* the Medimmune recommendations to the letter. They ave a brochure for patients, ask for it. The reason (at Hopkins, per our RO) most patients cannot tolerate more than 3-4 weeks of injections (if that) is that they develop persistent lingering nausea, which is exacerbated by the chemotherapy (especially if they get cisplatin). The good thing is that even a partial treatment seems to help.

My husband got through the whole series of shots but was meticulous about following the guidelines, and also, he did not take Ethyol on his 7 chemotherapy days. He was given carboplatin, which (although a strong emetic) seems not to cause such lingering days-long nausea as does cisplatin, so that undoubtedly helped.

To reiterate:

1) Drink 20-24 oz. of water (jello also counts) starting 90 minutes before the injections. The hydration helps prevent blood pressure drop (see below) and nausea.
2) Take a *serious* anti-nausea med 90 minutes beforehand. My husband took Zofran or Anzemet, the latter towards the end when the Zofran didn't work as well, these are *expensive* drugs but worth every penny if they get you through the Ethyol. Compazine did NOT work!
3) Apply hydrocortisone cream immediately to injection sites (rash, which can become generalized, is another side effect).
4) Your nurse will take blood pressure before administering the injections, and the med will probably not be given if BP below 100. BP will be taken again 15 minutes afterwards. Serious BP drops were common when Ethyol was given IV, not so common now it's given sub-cutaneously, but not unknown.
5) Close coordination with radiation team, radition must be given in a 30-45 minutes "window" after the injections.

On the plus side, it does work to protect salivary glands and there have been some recent papers showing a reduced severity of mucositis (which our dental onc firmly believes). Barry never had really bad mucositis, he ate all the way through and has salivary function in both parotids, even the one which got almost the full radiation dose, which his RO thought would be "wiped out,"

Gail

I want to reiterate what Gail is saying about the amifostine shots as Jack is another patient that completed the entire series by faithfully following the precautions. The hydration and serious anti nausea medication were critical. In addition to the 24 oz of water 90 minutes before the shot Jack drank between 2-3 quarts total for the day, which also helps minimize side effects like nausea. Like Barry, Jack did not get the bad mucousitis and we're hopeful about the salivary function returning as he continues to heal.

You are right that they only hit the highlights of the side effects and treatments in the beginning and that's why it's good to get your own information so you can ask questions. I think we're all in such a state of shock that it's hard to process what they're saying. That's why it's good someone goes with Teri on these appointments and that you write your questions out in advance. The important thing to remember is that there are good results from these treatments and people are surviving these cancers.

Jack also had a modified neck dissection prior to chemo/radiation and recovered well from that. Like your daughter he didn't smoke or drink, he worked out, watched his diet and went for regular medical and dental care. We were blown away to find out he was in stage 4 with no symptoms and no obvious risk factors. In the beginning I was consumed with trying to find out why this happened until I realized that it didn't matter what caused it because we have to focus our energy on going through the treatments to get rid of it. We're all in the same boat dealing with a surreal experience we didn't expect to have and doing the best we can with the information that we have at any given point in time.

Jack and I got through it with lots of support from family, friends, and this forum. Yes the treatments are difficult and there will be side effects - some that may be permanent - but that's what allows us all to be here to share our experiences and help each other. My best advice is to keep visualizing the end result of Teri as a survivor and do whatever you both need to do to get there.

Best of luck and keep asking those questions. If you haven't seen the getting through it posts on this forum they are really worth looking at. Very practical and encouraging information. You can also do private emails to any of us if you have specific questions by clicking on the icon in our posts. Scroll back to see all the I wish I had known comments and that may be helpful to you. Also the home page on this forum has tons of great links and information so look around what's in there.

Regards JoAnne

THANK YOU all for this support - I don't know what I'd do without you! As we're counting down till Monday (Teri's surgery day) the nerves and worries are compounding. I spoke to Teri this morning and she is now starting to accept the fact that this is REAL. I just wish I could take it all away. After reading all the posts re Amaphostine I don't know if she's strong enough to do it. I told her she will need to reach down for strength she didn't even know she had just to get through the surgery & chemo/radiation (if it's needed).
Bonnie

Hi all,
Teri's surgery went well - all margins were clear. Believe it or not I haven't spoken to the surgeon yet as he had back to back surgeries & never came down to talk to me - I left a message with his service to call me. However, I was very dismayed when I got to see her that she's in ICU hooked up to a ventilator! Is that normal? The ICU nurse said it was because of the swelling. They've got her hands tied down because she's fighting the tubes (one in her mouth & one in her nose). Blood is seeping out of her mouth. She became more agitated when she saw me & wrote that she was in TERRIBLE pain and needed help. The nurse said that they are trying to knock her out by upping the meds to the max but she's still wide awake. What could be going on? Bonnie

Bonnie, I hope your daughter is not resistant to pain meds like my hubby was. I can't speak to the ICU situation, since my husband's surgery was cancelled (after the trach and PEG tube were put in). He had pain but they had given him 2 shots of demerol along with morphine and he was still wide awake communicating with me! Just keep telling the nurse she is in pain and they will do the best they can. Disappointed the doctor didn't come and talk to you but maybe there was an emergency he had to attend to. Suggestion: the painkillers didn't work well for my husband,, but they gave him Benadryl for allergies and that knocked him right out! Best of luck for you and your daughter. We are with you in spirit. Please remind her this temporary awfulness Will get better, just hang on!

Pain med resistence is definitely a problem. She's one week post op and on both Codeine 3 and Oxycodone - they minimally reduce the pain for short periods. Along with that she suffers terrible nausea (taking Zofran). Has an NG tube as she can't swallow at all - has swallowed nothing for 3 days. Assume the tube will stay in indefinitely as she starts chemo/rad next week. This is SO hard!!
Bonnie

Neither Codeine or Oxycodone are adequate -they are medium strength pain relievers. Oxycontin, Duragesic, Demerol or Dilaudid would be a better choice, with morphine for breakthrough pain.

I have a person I am helping locally who is on a morphine patch -anyone else out there on this patch?

I was on Duragesic myself with Morphine for breakthrough.

Why the nausea if she hasn't started chemo yet? Codeine can be kind of rough until you get used to it.

Bonnie, Hydrocodone [liquid] has been John's best pain relief thus far. It makes him sleep. He tried the fentanyl patch, but got really spacey on it so he quit using it. He also takes Dilaudid for breakthrough pain when needed. A quiet, semi dark room with good air circulation also helps. I have kept the phone volumn turned to low and tried to keep extraneous noise to a minimum when he was feeling really bad. When the rad\chemo starts, you might want to get a suction machine for her-Ins. should pay- It is so hard to see someone you love suffer. Amy

NG tube was pulled and she now has a PEG. Rad was delayed because she had a bleeding problem that put her back in hospital (blood vessel at surgery site ruptured). Rad now starts next Wed. They say she's in the "honeymoon" phase right now, she's feeling halfway decent & even getting a little food down (in addition to the PEG feedings). Doc says in a couple weeks she'll be feeling like she was hit by a mack truck - sure not looking forward to it. Interesting comment about codiene & oxycodone being 'medium' pain relievers. Knowing her med resistence I'll be prepared to ask for stronger pain meds. I know the mouth pain is supposed to start around week 3 - when does the fatigue set in?
Bonnie

I think everyone starts to feel the effects of the Rad in week 3. I could smell my throat burning in week 2. RO said I shouldn't have smelled anything but I did. I know my body. After the effects start she will enter a very dark, nasty tunnel. She will come out but it will seem like an eternity. She will need you more than ever while she traveling through that tunnel.