So glad things are looking up! And good for you for being such a great caregiver!

What a turn around! Thats terrific. You have made a huge difference in your brothers life. So glad you have helped him to at least give it a shot.


I sent you a private message with info how to add a signature. It really is important in helping us to help you.

Some good news! Good luck with treatments.

What type of chemo and how often will he get it?

Focus on the calories and hydration now. PLENTY of both EACH and EVERY DAY.

Good luck with your brother's treatment. He's lucky to have such a caring sister.

That's great news and Dana Farber is one of the best in the nation! He'll be in good hands.

"T"

Thanks all - his head seems in a better place. He is building his courage to fight the fight. God bless him - he is so scared. He is 60 and hasn't seen a doctor in 50 years.

I have to fly back to LA and he will see a pain doctor, nutritionist and psychiatrist while I am gone (all at Dana Farber - what an amazing place). He had his scan/fitting for his RT mask today, goes back on the 13th for films to double check mask fit. I come back to be with him when he starts the Radiation and cistplatin on the 17th.

As you can tell, I live in LA and my brother is out here in Boston at Dana Farber. I am lucky that I am a Professor so I get more freedom in the summer. I was thinking that I would fly in to get him started and then come back when the going startes getting tough.

For any of you when went through the 7 week RT/Chemo treatment, when would be the time when he would start to be really feeling the effects of the treatments?

(And I started a signature below - how did I do?)

Effects are usually felt 10-14 days after starting, and the last two weeks are the worst, up to two or three weeks post treatment for certain conditions, 3 months, and up to a year or longer for others. Good luck with everything.

Those that get the Cisplatin every week seem to fair better from it's side effects than those, like me, that got the 3 Big Bag Method. No study has proven his delivery method is less effective so that's a positive.

Each of us can react differently to the Tx and my experience on this site has shown appx 10% breeze thru as if nothing has happened to them; 10% have problems from day 1 and the rest will notice changes quickly but won't start to have problems until appx the 4th week of Tx and it will progressively get worse until 2 to 3 weeks POST Tx with those weeks post Tx by far the worse. Again he could fall anywhere in this range.

Has he been fitted for Fluoride Trays yet?

Have him record his TSH reading in his next blood draw. This number may become important if his thyroid craps out post Tx due to the amount of radiation damage.

Please encourage him to eat like there's no tomorrow, especially his most favorite foods. Most of us quickly lose our taste and that doesn't return 100% and may take up to 2 years to recover what it will recover. I didn't start to regain taste until my 4th month post Tx and really wasn't happy about my taste recovery until my 14th month. I would be prepared to discuss this with him when he starts to feel the decline in his taste.

Please encourage him NOT to use the PEG until it's absolutely necessary. Far too many end up life time dependent on the PEG as their swallowing muscles can quickly lose their memory of their function.

Also try and get him to visit this site. Believe me it can be the best thing outside of Tx. So much of this cancer and it's Tx becomes mental and much of that can be diminished by the knowledge that we collectively bring.

I, like many, would welcome the opportunity to talk to him one on one so if he's open to that PM me and give me his contact numbers. Same of course goes to you.

In addition to David's spot on advice, I want to add a couple items.

Your brother needs to begin networking and lining up helpers. He will need a caregiver, preferably a full time one. Anyone who offers to help he will want to tell them when the time comes he will let them know what they can do. He needs to write down every single person who offers their help and that persons contact info. This can be especially important if your brother lives by himself.

I would suggest calling The American Cancer Society and asking for some help there too. Your brother will eventually need someone to drive him to treatments. When taking heavy duty pain meds its not safe to be behind the wheel. The ACS has volunteer drivers who can drive him occasionally to his treatments for free. The ACS will also give up to $300 towards transportation costs to get him back and forth to treatments. If he would rather the $300 be used at the pharmacy that can be done too. The ACS will give his preferred pharmacy a voucher worth up to $300 towards his medications. It will cover co-pays but not over the counter items. The ACS needs documentation so its best to call now and get the paperwork finished before treatments begin.

There are so many important things to do when going thru treatments and recovery. One of the key things to getting thru this easier is nutrition and hydration. Every single day NO MATTER WHAT, he needs to take in at least 2500 calories and 48 oz of water. More is even better. I know it sounds like alot but his body is burning up calories at a very rapid pace and it will only increase. In my post rad days, I would take in a whopping 7000+ calories a day and I still struggled to keep weight on. Athletes take that much in during training cuz they burn it off so fast. Just get this into your brothers head its a necessity and it must be done so when the going gets tough he will keep up the calories and hydration. Ask the doc for a prescription for hydration in the chemo lab. By doing that a few times a week it will help him to avoid becoming dehydrated. This can be especially important with his kidneys with having chemo. He needs extra water to flush the chemo out of his system.

With having cisplatin, your brother needs to pay close attention to his hearing and report any changes immediately. Cisplatin is known to cause high frequency hearing loss. I was lucky to avoid this but Davidcpa wasnt. It can be something so small as a little ringing in his ears or a buzzing. His doc needs to know right away before any more of that chemo is given.

I know its too much to take in all at once. It can be overwhelming. Dont worry, we are here to help get you both thru this.

Good luck!!!