I found that I felt better when I woke up and felt worse as the day wore on so I was fortunate that I chose a 9:30 am time. Even though I had to drive 40 miles one way and directly through the City of Tampa, I missed the am rush and was home way before the pm rush.

My best time was early morning for rads and chemo right after. By the time these 2 were over, the traffic had let up and I had a nice drive home. Good luck and welcome to our family.

Hi, Well today was the appt for fitting the mask and the CT for the mapping for IMRT. Everything went smoothly and we both feel comfortable with the doctors and level of care. We met with a nurse to review everything and set the schedule. He will start radiation on Jan 5th and have the 1st chemo treatment the same day. The peg tube will be put in about a week before. I have a couple of questions. The nurse made it sound like he would be quite ill from the chemo immediately and really commented about how awful he would feel. It's good to be realistic, but from all the reading I've done, I assumed he would have 2-3 wks before it all caught up with him. She also suggested that he starts using the feeding tube before he really needs it to practice and see how his stomach reacts. This seems like a good idea. Davidcpa, how did you go without a Peg and not lose too much weight? Next week we see the med oncologist and the GI Dr for info on the Peg. I would appreciate any feedback and advice. Also, how soon after the treatments did you all feel like you were over the hump? Thanks for all your support...Geri

chemo has immediate effects for many
radiation takes (usually) 2-3 weeks to kick you in the hiney
each person is different though and the more built up you are
prior to beginning treatments and the more well nourished and
hydrated you remain the better you will do thru it.

the peg tube is a huge blessing and not hard to use. it is a bit painful at first (figure about a week) but it gets better ... watch for redness and increased pain in case it gets infected as he would want to get that treated if it happens but most go thru it just fine and are thankful to have it for backup when the mouth gets too sore to eat normally

most report feeling over the initial "hump" about 6-8 weeks post treatments. this varies so much by each person though and how big of a hump there is to conquer also varies so one has to remain positive, and be proactive when you see problems beginning to arise. there is usually help for all problems you may encounter so speak with the doctors and nurses as you go and he needs something - make sure they hear you and respond with help ... if they do not - speak to someone else or speak again and again until they listen.. there is no need to suffer when there is help available.

i wish you and hubby all the best. by mid feb you should be looking BACK on it all and being glad it is all behind you.

Geri,

I did not have serious effects from the first dose of Cisplatin. After about a week I began to have significant taste issues and it was pretty much gone by 2-3 weeks out. The Cisplatin enhances the effects of the radiation treatment and I found the overall treatment to be cumulative. That is to say that I was much more affected towards the end of treatment. After about 2-3 weeks I started coming home from my morning to early afternoon treatment (I accomodated the schedule at Stanford) and took a nap. The combined treatments made me very tired and I slept a lot to get through.

I did not get a PEG tube so can not share any experience in that regard. Eating was very difficult but I survived on Skandi shakes enhanced with protein powder and yogurt. I lost 35 pounds over the course of the treatment. In addition, I lost a lot of muscle but have replaced it all (and more) through a diligent exercise regimen.

Prior to treatment my Radiation Oncologist at Stanford suggested I get any metal fillings in the lower jaw replaced with epoxy. Insurance did not pay for this but I had it done in order to help prevent damage to the rest of my mouth. She told me it would "help to keep your tongue happy" and I believe she was correct.

I know this is a stressful time and the prospect of the treatment can seem daunting, but you can and will get through it. Please feel free to send any questions you may have. Where is he getting treated?

Enjoy the Holidays! You will get through this.

Hi again, I would like to know if anyone can explain why some people have weekly Cisplatin and others have the dose 2x -3x? Is this just the standard of each hospital or is there a medical reason? Which seems to be the choice of the majority of doctors? It seems like the smaller more frequent dose might have fewer side effects then the mega-dose. Also, did anyone's oncologist tell them not to take any extra antioxidants or have any restrictions for supplements? Thanks, Geri

Geri,

My understanding of the Cisplatin dosage is the larger, less frequent dosage is 'the standard,' approved and accepted by insurance companies. The weekly, smaller dosage has been now found to be just as effective, but, I assume, more expensive, although it has far fewer long term side effects. I was able to get the latter dosage approved because I ran a higher risk of neuropathy, nerve damage, because of my previous chemotherapy history. I think for most patients, though, the doctors have to have a compelling reason for the weekly dosage in order to have it approved by insurance.

- margaret

As far as when the "effects" start to kick in it seeems to vary. The 1st 4 weeks of Rads and 1 chemo I was doing almost everything I was doing before, even went jet skiing. After 2nd Chemo dose started to slow down but still drove back and forth, worked some and made myself stay semi active (short walks around the block). The last 2 weeks of Rads and last Chemo and 2 weeks after were not a lot of fun. But drank water , Ensure and got through it.

I cannot comment on Peg as I did not have one.

Geri,

First off I did loose a ton of weight, which I could not afford to and that led to all sorts of complications and I ended up in the ER 3 times in the latter stages of Tx to get much need fluids. My biggest problem became nausea which I just couldn't seem to control. Once I stopped taking my pain meds (which didn't seem to work and caused more adverse side effects), the nausea went away and I started swallowing 3000 cals a day using Carnation Instant Breakfast VHC and the rest was history for me. Believe me we have had a ton of posts on Peg vs. No Peg and I don't want to start another debate but if he does get the Peg please make sure he uses his throat daily through out the entire Tx and beyond.

My recommendation is that he get WEEKLY Cisplatin Txs and daily IV's of fluids and a port and swallow daily to keep those muscles in good working condition.

Geri,

My Bill's experience was about the same as "Bill in NC" ....he had weekly Cis and twice daily rads and really did not start feeling ill until the third week into treatment. The bad stuff came on quickly...Friday of week 2 I was asking when Bill would see changes, etc. and by Monday of week 3, he stopped eating by mouth and we were putting everything thru his peg. I charted each calorie and ounce of fluid to make sure he met the optimal intake and also placed a bottle of Rain by his chair to insure that he was swallowing the whole thing by the end of the day to keep that mechanism working. The best thing you can do to help with his fight during treatment and his recovery is to keep hydration and nutrition maxed.

Bill is doing well...eating and drinking just fine and we got a great report from the CCC yesterday. Even with a dire staging, people do make it thru and have good quality of life afterwards.

Best wishes thru all of this....hugs,

Deb