Ok, well I am one week from my first radiation treatment. I was fitted for my mask at the end of last week. Ok, so who can tell me what to expect on my first treatment, procedure wise and pain wise??? I plan on driving myself. Is that ok? I am a single guy here and am trying not to rely to heavily on my parents just yet.

Andy

Elocia,
You will never feel pain directly during radiation treatment. During and following your first treatment, in fact, you won't feel a thing. The effects of the radiation are cumulative and take a while before the side effects begin to be noticed. After two or three weeks I began to have swallowing difficulties and the burn on the skin began to become apparent after about three weeks if I remember correctly. Sometime around the three week mark, I got my PEG tube. Although the radiation eventually takes its toll, you don't feel pain from the rays when receiving it, so don't fear being on the table.

Secondly, I was also single when I was going through radiation and almost always drove myself to and from MDACC. They are nice enough to provide free convenient valet parking for radiation patients. I did have people available to drive me and did take advantage of it a few times. By that time I was on duralgesic pain patches which caused me to doze off a little. However, for the most part I had no trouble driving the one-half hour back and forth from the medical center to my home.

Best of luck...

Danny G.

Andy,

You are about to begin the long journey, but it really is not that long. Keep a positive attitude and all will be just fine.

I just recently completed my treatments a couple weeks ago. I drove myself to every single treatment, all 40. There really is not much to the treatment that you did not go through during the simulation when they made the mask.

The biggest difference is that the time it takes will be only minutes for the actual treatments, perhaps ten at most for the majority of them. The only difference will be when they take x-rays later in the process and that will consume a bit more time, but not much. I would guess that the longest that any of my treatments took might have been fifteen minutes.

In my case, I saw my RO once a week after treatment. I also saw the nurse for a scheduled appointment one day, though they were available to see daily, and a dietition on another day.

I wish great things for you as you begin your treatment. I, and all the others are here to help if you have any other concerns or questions.

Bill

Andy --

You may need to have someone drive you about 4 weeks or so into th treatment, depending on whether you are on serious pain-killers by then and how you react to these. Some people can continue driving when taking Oxycodone or while on Duragesic patch, many cannot (safely, that is).

Also, if you are getting amiphostine, you may have nausea afterwards which makes driving oneself difficult. Are you getting concurrent chemotherapy? You may need someone to drive home afterwards; my husband was a bit out of it on chemo days (afterwards). He would drive the 45 minutes to Baltimore and I would drive the hour back (difference due to rush hour in afternoon!)

Good luck
Gail

Andy,

I also drove myself to and from treatment all the way through -- in my case it was no more than a half-hour each way (it was actually on my way home from work) and I wasn't on really heavy-duty painkillers. Also, I didn't have chemo, which could make a difference.

It may turn out that you can drive yourself, but I'd suggest you have a backup plan just in case you need it at some point.

Cathy

Thanks everyone for the above information. I have to have 35 radiation treatments, and 3 chemo (cisplatin) treatments, on day 2, then 3 weeks later, then another 3 weeks. I was figuring on the chemo days, I would get a ride both ways, and the radiation days I would try to drive myself. Yes, I am opting for the amiphostine, so I will see how that goes. I plan on taking an Ativan for anxiety before and a compazine for the nausea of the amiphostine. Lets hope this all helps......

Andy

i had no chemo so it may be differant three or four weeks in , but i drove myself to all 30 treatments. this also could change if you don't have IMRT. my side effects were not too bad, lack of saliva, loss of taste and felt like i had strep throat for last two weeks of treatment and 10 days after they were over. keep your head up and a positive attitude and you will do well. mo

The first 2 weeks you really don't feel anything. The last 2 weeks are hard. I felt worse the 2 weeks after the radiation stopped. I drove my self through the entire treatment and worked through the entire treatement only taking shorter days at work the last 4 weeks. The hardest issue is eating after 2 weeks. Go for soft non acidic foods and if that fails do 2000+ calaries of boost or ensure the liquid suppliments. Good luck and hang in there, it was the fastest 6 weeks of my life so that was good.

Andy,
Just to point out the darker side. I had "just" 2 cisplatin and 35 IMRT and about 3 weeks into it was sick as a dog. I lost so much weight that I had to be driven to radiation (a 60 mile trip through Bay area traffic) and was pretty much disabled and unable to work for almost 2 years. I was also on 75mg's of Duragesic and morphine tablets for breakthrough pain. Did I mention that I was very healthy going into it, didn't drink or smoke and the techs thought that I weathered things pretty well.

Hopefully your experience won't be so extreme, we all respond differently to trwatment.

Andy,
Like other posters, I managed to drive for treatment in the first 2 weeks and I started taking painkillers at the same time even though the pain was very slight in the beginning. My dosage was heavier than Gary's with 4 rounds of cisplatin and 48 sessions of radiation (conventional one). Fatigue was serious when I stepped into the third week and I had to take a taxi to the hospital. I could still go there alone because I didn't want my husband to stay away from his job and all my relatives lived rather far away from me. But about 6 weeks after treatment started, the condition became so bad that I was admitted to hospital for treatment. It was a scary time but I managed to overcome it soon. Take care,
Karen

Andy --

I wouldn't rely on Compazine to alleviate the amiphostine nausea. It did zero, zip, nada for Barry -- he had to use Zofran -- and he was the only person in recent times at Hopkins to make it all the way through with the amiphostine -- most give up about 1/2 way through due to nausea. The cisplatin is more of a nausea problem (for many, but not all) than the carboplatin Barry had, as well. You must ask your doc about getting a scrip for one of the serotonin drugs like Zofran, Anzemet, or Kyril or you may not be be a happy camper! (Well, no one is a happy camper during chemoradiation but you get my point...)
This drug should be taken 90 minutes before the amiphostine (per Medimmune's administration directions), along with 20-32 oz. of clear liquid drunk in the 90 minutes leading up to the injection.) And definitely, sub cu injection, not IV!

Ativan may also make you very "out of it" -- Barry tried 1/2 tablet and that still made him too sleepy to drive -- test it at home.

Gail

Thanks for all the info. I do have prescriptions for Zofran, Ativan, and Compazine so hopefully that will cover most of it. I was going to take an Ativan for the anxiety, and then either a Compazine or Zofran for the nausea due to the Amiphostine. I just hope that this helps.

Andy

Andy --

What our radiation nurse recommended was to do teh amiphoistine with teh Zofran the first few times, and try it with Compazine. If you have no problem with it with Zofran, that is. Barry did OK with the Zofran, so tried amiphostine with Compazine, got quite nauseous in afternoon (he received the drug and radiation in late morning) and that was enough to switch him back to the Zofran -- expensive but as he said many times, "worth every penny!"

However two people got really sick (even with Zofran) the first time they took amiphostine so said, "no thanks!" Our RO (who is considered an expert on this drug) said it adds about 10-12% increased salivary sparing to IMRT so it is not the end of the world if you can't take it. That being said, Barry has excellent saliva 5 weeks' out so it undoubtedly helped him.

Gail

Hi Andy,
I just finished day 3 of radiation with Amiphostine. They used Zofran the first day. I was very sick. Day 2 they used zofran, gave me the Amiphostine, and I threw up right there. They then gave me a shot of Ativan so I could get through the radiation. Worked like a charm. They sent home a prescription for Ativan and it has been working for me so far.. They still start my IV with some Zofran. The actual treatments have not been bad at all. Feel free to email me([email protected]) if you want to talk more as we go through this. It's going to get pretty scarry, but reading everyone's enoucouging stories, I know we can do this. Hang in there. Eat lots of protein this week!! Have you started taking Salagen? -Kim

Kim --

Are you geting the amiphostine by IV or subcutaneous injection?

Medimmune (which makes amiphostine -- Ethyol) is pretty specific in recommending that it now be given by injection. There were too many side effects with IV, including serious blood pressure crashes. The Ethyol guys were at Hopkins and gave a talk, and they discussed that issue. They are supposedly trying to develop another delivery system that reduces the nausea but I have no idea what it is.

Re the Salagen, Hopkins doesn't start this (actually, they use Evoxac mostly now) until at least half-way, when you get a salivary evaluation. If you are OK then, then you get another evaluation at end of treatment, and if still OK, one two months' out. Etc. Barry was OK first two meeting with dental onc, next one is Dec. 6. He doesn't think Barry will have to use any meds for saliva -- and he is very pro-amiphostine, by the way, based on his research -- but will monitor things over time.

Good luck to you both (Andy and Kim) -- it is hard road but a necessary one...
Gail

Kim, its good to know I have someone that is going thru this at the same time. I know everyone on here really cares about each other and that is why I am grateful to have found this site.

My Dr. did give me a prescription for Evoxac which he recommends to take 3 times a day. I have all the drugs that everyone lists, but just need to figure out which combos will work for me. I was going to start with taking an Ativan for the anxiety, and a compazine just to see of if I can do that instead of Zofran. If the Compazine isn't cutting it I will step up to the Ativan and Zofran together. I just looked and I need to get another prescription for Zofran because the one they gave me while I was in the hospital for the Peg tube is only 4mg and the chemo sheet lists 8mg needed for after chemo.

Andy

Andy --

They will undoubtedly give you an IV anti-emetic like Anzemet just before chemo -- this lasts 24 hours (about) -- so it is often after this that the chemo nausea can strike.

Hpkins didn't give my husband amiphostine on chemo days as they said it would "lay him out" so ask your Drs. about this -- as well as asking your radiation and chemo nurses or doctors about proper ways to handle your meds. We did a lot of "tweaking" to get the right approach, which varies from patient to patient.

Best, Gail

Well, I had the first of 35 rad treatments today with the Amiphostine injection and it went smoothly. I sincerely hope this continues for a while. Tomorrow will be the first chemo so we will now see how I handle that.

Andy
Thanks again for all your support from everyone....

Andy,
Here's hoping you have smooth seas on your voyage through the treatments. Keep us posted!

Andrea

Well, one week down, and I am hanging in there. The second and third day of the Cisplatin was extremely nauseous but i am dealing with it. At the moment, I have had the hiccups for the past 2 days steady and this afternoon the Dr prescribed Baclofen. Has anyone else had these hiccups like I have???

Andy

I had them and the Baclofen took care of it.

John had them after each Cisplatin day for several days - even got a thorazine prescription out of frustration but only took one pill - I think by then they were going away on their own. Good luck and keep hanging!
Janet

Elocia - Sounds like you are doing great. Keep up the good work. I was getting radiation twice each day in conjunction with chemo. Hiccups were a problem in the first few weeks, then not. When the going gets tougher, think about all the clever crafty things you can do with that mask!! Thoughts and prayers are with you, Tom Jackson

Well, I was able to make it 10 injections of the Amiphostine until we decided we had to stop it. Over the past week, each time I received it it caused me to break out in a rash all over my body. I was taking Benedril as they recommended but to no avail. I hope that those 10 I had will help.

Andy

Just wondering how your treatment went. I just found this thread and not sure if you have another one regarding finishing your treatments.

If you click on the "profile" icon of the original poster it will tell you when the last post was. At least if they haven't been here for a while.