Hi --

I'll post the soup recipe on another forum topic (hmmmm--medications? adjunctive therapy?) -- made it again yesterday. MMMMmmmm...

Now only 6 more treatments -- three more regular, then Friday, Monday and Tuesday radiation only to the primary target area (same Gy dose) which is tonsil and base of tongue. One more chemo on Wedesday.

Barry is holding up well though his throat is more sore (still eating) and he is being more careful about pain management. His skin is still good tho a bit right under his chin looks sun-burned, so it may blister or peel. Has anyone tried tea tree oil for this? (I know it is good for regular sunburn).

ROs very pleased and encouraging. But of course we are starting to wonder -- did this work? Will be 2 months before they will want to do the scans, to avoid being "scared by remaining inflammation" as RO said.

Count-down...

Gail


Gail

Yay! Six more treatments--that really is light at the end of the tunnel. I hope Barry's skin stays OK. I think whenI had about that time left I just ahd what looked like a sunburn and it turned so quickly RIGHT at the end into a really bad angry red peeling burn and skin infection. If he starts peeling, try the silvadine ointment that they use for serious burns in the hosptial. It works miracles.

Thanks Nelie, I am watching it carefully and really appreciate the warning. (As they say, forewarned is forearmed). It is mostly a strip sort of below his chin and that is where normally his skin is rarely exposed to the sun, so probably is particularly vulnerable.

Gail

OK guys, only FIVE more treatments to go (oh, and one last chemo tomorrow). Then it will be OVER! Well, for a week, then Barry meets with dental oncologist and HPV expert and maybe some others medicos, and then we really can rest (for a month) until a round of other appointments with his MO and RO. However, no scans ("no peeking") for at least two months to allow inflammation to subside.

Then we shall see what all of this accomplished....keeping our fingers and toes crossed!

Gail and Barry

p.s. "Soup du jour" is my grammie's pea soup...mmmmmm...

Last chemo today, the nurse gave Barry a hug -- but be assured he was not sorry to say good-bye. Four more radiations, the last three are just focussed on the primary tumor area (right tonsil and base of tongue) and will not hit anything else (thanks to the tomo machine). Barry's platelets were up again this week which I find amazing, they're now back in normal range though his hemocrit is still a bit down. Throat is pretty darned sore, and still some thrush present but manageable -- he just needs to time his pain-killers for meals.

The RO showed me how the tomo scans are meshed with the simulation scans to ensure 100% concurrence and overlap and thus very accurate targeting and sharp margins. We feel this technology is largely responsible for his relatively localized problems with mucositis (none in mouth proper) and phlegm. The rest of his good performance I attribute to his excellent health and condition going in and his upbeat and positive attitude throughout.

He is my hero!

Gail

Gail,
I'm glad Barry is also almost at the end of his treatment. It has been amazing to parallel Barry's treatment with Michael's where Michael is so ill from the treatments and Barry is not having the horrible side affects so many experience. Since both guys were in good health when they went into treatment, it must have to do with the differnet chemo they were receiving and maybe the new machine at Hopkins.

Come up with some way to celebrate not going to hospital for treatment and enjoy your first day off and many more.

Take care,
Eileen

Hi Eileen,

I think there are a number of reasons Barry is doing well. But having said that, it has certainly not been a walk in the park for him and he is dealing with a number of unpleasant side-effects as he finishes his 6th week today, very sore throat and soft palate with mucositis and thrush (mouth is still pretty good, however), phelgm at night, need for oxycodone to eat etc. It does seem as if the tomo-therapy machine produces less severe problems, and this is from the horse's mouth, the oncology nurses, doctors and nutritionists -- and carboplatin appears to be better tolerated than cisplatin, at least based on what I have read on this forum and again, from the nurses and doc's.

However Barry is also doing better than anyone else at Hopkins who is getting tomo and carbo (so say his RO's) . We think this is due to several things: 1) being in very good shape before treatment -- we had been hiking in Himalayas this spring and he was just back from trip to England where he spent a lot of time doing bird surveys with his brother in very steep terrain. He's been on this prostate-healthy diet for two years which means his cholesterol, weight, etc. etc, were excellent. In fact, Barry said he felt as fit as he ever had in his life when he was diagnosed. Plus he has a great "this is not going to defeat me" attitude and lots of support from family and friends. 2) Not having really debilitating surgery beforehand -- recall Michael had a neck dissection and a woman here at Hopkins who is getting the exact same treatment as Barry is really wiped already (only 1/2 way through) as she was so weakened by her neck dissection (not done at Hopkins, they wouldn't have done it first). Barry did have removal of his primary tumor (tonsil) but ENT wouldn't touch the base of tongue. It takes a long time to recover from surgery and sometimes your body is just not ready for the stress of chemoradiation. 3) Finally, Barry's been absolutely meticulous about his mouth and skin care, using various things which we had seen recommended (e/g/ the aloe in mouth, Therabite etc. ) and also, being very serious about continung to eat and drink. We see a lot of people who come out from their radiation treatment, pick up their things and go home. Not surprsigly, their skin is not in great shape. Or the ones who won't eat "because it tastes like nothing" -- Barry absorbed the warning that "food is medicine" well and his calorie intake has stayed stable, although he has gradually lost the weight he gained beforehand. He also heeded the warning from his ENT (the one who herself had HNC) to "keep swallowing" and he was determined to do this, which became a moot point when his peg fell out last week (!) and they didn't want to replace it. Also, he has continued to exercise, albeit modestly, and says his energy levels -- which fell intially -- have been stable for last three weeks.

Whether the fact Barry's never smoked and has no associated co-morbities also contributed, I am not sure but interestingly most of the people we see daily at radiation have also never smoked!

Anyway, he has 3 more treatments which will only hit tonsil bed and base of tongue (of course, just where he is most sore!) and then he has to heal. We were encouraged when we met a guy yesterday who had been 2 weeks' ahead of Barry on tomo/carbo and he said he is feeling much better, no more phelgm, mouth recovering a bit and he's starting to eat more things.

Will keep everyone posted ...

Gail

Hi all --

Well, the first act at least of the "show" is over -- Barry finished his radiation treatment at noon today, it was a very short one as just a boost and then only 2/3 of the field as 1/3 had been done Friday before the tomo-therapy machine went down. (It is still down, the guys are getting used to working on it until 3 am, then staggering home -- they think they've now have solved *the* problem but too late for us).

The only little wrinkle (well, two) was that the RO asked him to take the Ethyol again for the last three treatments as the radiation field isn't as tight with the older machine (and of course, that meant taking Anzemet and drinking 20 oz. water in 90 minutes, not easy to do with a sore throat) and also, after the first treatment Tuesday his neck got quite red, much redder than with the previous 30!. Why? Well, we read the "cautions" on the antibiotic he's taking for his staph infection and it clearly said if you are taking gadifloxin, "stay out of the sun as you will get sun-burned." OK, what's a linear accelerator but a giant photon source? It does seem to be fading already but I bet he will peel...

Barry says he will get on-line this weekend and give you his thoughts...right now we have to wait for the 2-month mark when they check things out. (RO says "no peeking" before then as it leads to false positives and a lot of anxiety for oncologist and patient.)

So I guess the next couple of months are the "second act."...

Gail

Congratulations to Barry and to you for finishing the first act so gracefully....now you both have some time to rest and recover without those trips every day...enjoy it.

Nelie

Gail,
I hope that this isn't true for Barry, but in my case and also for many others, the hardest part began when treatment ended. I rang the bell and headed for home, delighted that the radiation was over. However for the first time during my treatment I got depressed, and, along with feeling lousy,there was also a feeling of hopelessness. When you go in for treatment every day one feels like you are being pro-active and you are interacting with people working to heal you. Once I got home I just felt like there were a lot of hours in the day and nothing to look forward to but the next tube feeding.
The good news was that I found ways to cope and began to feel much better as things steadily, if gradually, improved.

I think it is great that the two of you are so well-informed and that Barry came to treatment with such an active, healthy life-style. In my case one of the ironies is: now that my swallowing finally seems to have really improved, many of the foods that I find easy to eat are not particularly healthy, like steaks, fried shrimp, mexican food,lasagna, french fries, etc. but at least I no longer need the milkshakes that I used to drink a couple of times a day for sustenance. Of course certain vegetables are easy to eat as well.
Best of luck with this new phase.

Danny G.