I posted this already under the wrong topic so I'll post again.I'm putting it under the topic of fear because I'm fearful and anxious for the results. I've seen some T4 survivors so I know they can be shrunk and that gives me hope. I have heard different things on how long they wait to run the scans after treatment is over. He has had 43 radiation treatments so I know the inflammation will have to go down. Does any one have any idea how long?
Thanls...Kerry

Kerry, my husband's last rad tx. was on July 8, 2005. He had the follow-up CT scan on Oct 26, 2005. It was ordered by his surgeon, who is also his Oncologist. It was clear of cancer according to the report. It is very hard to wait. Hope Stephen's meds help him. Amy

Hi Kerry,
I think there is no standard to when the first follow up scan takes place. It really varies from individual patients and doctors. In my case, I had my follow-up tests two months after completing the whole treatment. I was taken care of mainly by my oncologist who arranged all the scan tests once I completed treatment. He estimated that the treatment would have ongoing effects on the tumors for quite a while and thought that in 8 weeks' time, the scans would show a clearer picture of the effects. All tumors gave full response to the chemo-radiation and so I didn't need surgery.
I had to wait for quite some time the results of the scan tests and that waiting period could create greater anxiety too. I learnt to hope for the best and prepare for the worst.
I am sure you and your husband will get out of the tunnel very soon.

Karen

Hi Kerry --

Generally the rule of thumb for a post-treatment PET/CT scan seems to be about 3 months. This allows the worst of the inflammation to go down and healing to take place. There will still be some areas that will show activity (if it's a PET scan) and an experienced radiologist can usually (but not 100%) tell if it is due to normal healing (or perhaps, infection) rather than residual cancer.

If anything suspicious shows up, your doctor may order an MRI or wait a bit to see if there are changes, or -- if the area can be accessed easily, say base of tongue or tonsil -- do a biopsy. The ENT surgeon on my husband's team at Hopkins emphasizes that while fused PET/CT scans are very accurate, they are not 100% so, and not a substitute for a thorough physical exam (endoscope, etc.). A number of tools are used to assess response to treatment.

My husband, whose treatment ended Sept. 28 '05, has had two PET/CT scans and also several endoscopic and direct physical exams, and they have found no sign of cancer. He was Stage IV, base of tongue and tonsil, treated with 33x radiation (tomo-IMRT) and 7x chemo (carboplatin), no surgery save tonsillectomy prior to chemoradiation.

Gail

Thanks for all the info. Gail that was what I was wanting to know. How is your husband doing now, seven months out? Which side effects still remain? Which are better?

Thanks
Kerry

Hi Kerry --

My husband Barry is almost (but not quite) back to normal -- and some things will never get completely back to normal, which is to be expected -- you just hope they get to the point where they are manageable and you can live with them. It is very importsant to have a positive "this will not defeat me" attitute to get through the treatment and to deal with the side-effects, and all the work that has to go into getting back towards normalcy. Sometimes it seems to be two steps forward and two (or even three) back -- until one day it is only one step back, and then the end of the tunnel is in sight!

The side effects which remain include some dry mouth -- Barry took amifostine and also had a parotid-sparing radiation plan so has quite good salivary function considering he had bilateral radiation -- does not have to sip water, for example -- but things which he uses now include Evoxac 3x a day and he chews XyliMax dental gum a lot, finds the chewing action stmulates natural saliva production better than anything else (and he's tried Numoisyn and all the Oral Balance products). He uses a squirt of Oral Balance liquid before bed, however, as he tends to mouth-breathe a bit. His salivary function is improving over time and his ENT thinks he will probably be able to cut back on the Evoxac in a few months if things stay on track.

Eating -- Barry ate all the way through treatment and never used his PEG, in fact it failed and fell out in the last week. Towards the end of treatment he was eating mostly things like scrambled eggs, pureed soups, noodles with mild sauce, smoothies, Boost etc. -- and that slowly and carefully, with lots of water. He was eating maybe 1700-1800 calories a day, not enough to regain weight but he didn't lose any more. Within 6 weeks (that is, by Thanksgiving) he could eat soft regular foods-- we had broiled salmon and mashed potatoes for dinner. In mid-January we went to Mexico birdwatching and he could eat everything except the spicy foods and very dry things like taco chips. By this time he was eating about 2500 calories a day (or more) and that's when he started to regain weight. (He lost about 20 pounds, of which 8 was due to a post-treatment infection -- he's regained about 6-7 of these. His BMI is within normal range for his height.) He tries to ge in 3 snacks a day plus meals, with an eye towards high-calorie-density foods and not too many "empty" calories.

Barry can now eat most everything, however all but the mildest spicy foods still irritate his throat so you can see it takes a long time for this to heal. However it is happening, every week is better -- he can now handle mild Thai soups and Chinese whereas a month ago they were off-limits. The redued saliva means that some sticky foods are harder to handle and muck up his teeth so that's where water during meals is important, also immediate post-eating tooth care (or chewing the dental gum)

He had a barium swallow test in November (about 6 weeks' out) and this showed weakened swallowing muscles (despite the fact he ate throughout) and that his epiglottis failed to completely close -- due in part to residual inflammation -- reason he got an aspiration pneumonia right at end of radiation. The therapist gave him a series of exercises to do and he does them religiously, much improvement noted over time, recent endoscopic exams showed things looking much better and he now can eat at the same speed as the rest of us, though he is still careful about chewing and swallowing. He used a TheraBite device from the begining to avoid trismus and continues to use it a few times a day as this can creep up on you post-treatment.

Barry maintained his energy pretty well -- he took 500 mg l-carnitine liquid every day through treatment and beyond -- (several studies support this for "cancer fatigue") -- with doctors' OK of course. In Mexico (3 1/2 months from end of treatment) he was able to do all the long mountain hikes and he has never looked back. He does light weight exercises almost every day, as he lost a lot of upper body strength during treatment .

He did not take Taxol (which you husband is getting) due to concerns that it might exacerbate the "benign essential tremor" he has in his hands and lower arms (hereditary, his dad had it) so Barry only had the carbo and this mainly affected his blood counts, which took some months to rebound to normal range. The hospital checks these, as well as his thyroid function, with blood draws about every 3 months.

His hearing was checked post-treatment and no significant change was noted, ditto they gave him an eye exam for any changes there. (None).

A friend from Australia brought him some benzydamine (Difflam) lozenges a couple months ago and these really helps reduce the mouth/throat inflammation. OTC in Aus and UK, not available here -- supposedly best stuff against mucositis but FDA is still meditating on it, I guess. Barry's went off to England yesterday to see his mum so he will get some more, as he still obviously still has some irritation in his throat.

This is a long post and I hope that others on the forum will forgive it -- but it seemed a good time to answer Kerry's questions...

Good luck, Gail

gAIL,

THANK YOU FOR ALL THAT INFO. AND I'M SURE THERE ARE OTHERS OUT THERE THAT WILL HAVE THE SAME QUESTIONS AND WIIL GET ALOT FROM IT. ONE OTHER THING THOUGH,BELIEVE IT OR NOT MY HUSBAND HAS AN ESSENTIAL TREMOR IN HIS HABDS AS WELL PASSED DOWN FROM HIS MOM(I EVEN THINK MY DAUGHTER IS GOING TO HAVE IT). IM A BIT NERVOUS NOW BECAUSE IT NEVER CAME UP WITH THE DOCTORS AND HE WAS ON THE TAXOL, FOR THREE OF THE FOUR ACTUALLY BECAUSE HE HAD A BAD REACTION TO IT AND THEY SWITCHED HIM TO TAXITERE, WHICH IS STILL IN THE SAME FAMILY. WHAT IS IT THAT MAKES IT A PROBLEM BETWEEN THE TWO? SORRY TO KEEP BUGGING YOU WITH THESE QUESTIONSGAIL.
THANKS SO MUCH, KERRY

We looked up the drug info for all the chemo drugs on the web and found the taxanes can cause peripheral neuropathy, as does cisplatin. My husband's medical oncologist was concerned about his essential tremor being made worse -- as was my husband, as it interfers quite a bit with his ornithological work (holding binoculars) and he has to take Primadone daily to control it. Barry asked her bluntly, "if I do not take the Taxol, what will be the difference in effectiveness of the treatment?" That is, "give me the info on which I can make an informed decision -- if the increased risk is small, I won't take it, if large, I guess I will." His MO (who is one of the top in the field) essentially said -- "there are no good studies that show a consistent, significant improvement with use of Taxol in conjunction with platinoid chemo plus radiation, although there are some which show it adds to control when the chemotherapy is combined with surgery (no radiation). But in my book, you don't have to take it..." So he didn't. His response to chemoradiation was as good as could be expected, according to his doctors, so the lack of the taxane did not compromise his treatment. He has no increase in the essential tremor, either.

Btw, his daughter also has it...

Gail

As others have said the rate at which CT scans are done varies with doctors' philosophies. In our case the Radiation Oncologist (RO) is absolutely opposed to doing scans, our ENT is indifferent and our Medical Oncologist (MO) demands them about every four to six months or so.

So far from end of treatments in July 05, two sets of scans have been done the fist in Nov 05 and the second in May 06.

For the first one we were told by the MO and two other doctors that the cancer had returned. We were shocked. Than we had our ENT and RO look at the scans and they assured us that there was no tumor or recurrence. The RO was very upset that the scans had been done in the first place.

RO went further to say that radiologists who read the scans sometines put the most pessimistic results in the report and this is for liability reasons. In essence this is a CYA tactic that protects themselves from lawsuits. In the RO words is hen left to the RO and/or the ENT to clean up the mess in the sense of reading scans and reassuring patients that all is normal after they been told that the cancer is back. In this case the RO had the scan report redone.

For the second set of scans we got the results today. The MO said that they were negative with respect to lymph nodes enlargement or nodules but the scans showed a tiny amount of fluid around the heart. Now we are worried about this. The MO could not tell us conclusively what was the cause of this fluid around the heart. I wonder what the RO will say when we see him next.

THANKS VIN. I HOPE THE FLUID TURNS UOUT TO BE NOTHING ..KEEP US POSTED..GOOD LUCK

KERRY