I went in today for the all day event which is a PET/CT and waiting on the results. This time it finally came back with the all clear (NED). Since all the others have needed some sort of follow up inspection it was nice to not need that in this case.
The doctor tells me that I’m in the 90% range now that I’m clean for 2 years and I won’t have another scan for 1 year. If/when I make it through that scan with flying colors I’ll basically be in the 100% range. Fingers crossed and prayers rising.
Well this past weekend marked the one year anniversary of the completion of my radiation treatment. Earlier this month I had a new CT scan that as usual showed up “something” but after close inspection by the doctor revealed no real problem. So, the summary is that I’m still NED.
Outside of the periodic doctor’s visits and the testing I feel great and I’m able to do whatever I want, except enjoy eating the way I used to. I exercise several times a week and I’ve gained a lot of my weight back. I continue to attend the monthly support group meetings in an effort to help those that are in the position I was in 12-18 months ago and I really enjoy it.
My next scan is in 6 months so there will likely not be another post until then.
Well, the second scan has been done and the results are in. As usual there was something “suspicious” on the scan but a physical inspection by my ENT revealed nothing to worry about. They claim that it could be interference from my dental work. I guess I would have brushed and flossed better as a teenager if had known it was going to throw off the results of my PET scans later in life.
The next scan is set for early March which will be the more significant milestone since it marks one year since treatment was completed. Based on the statistics I’ve read that 80% of recurrences happen in the first year I think I’ll be able to relax a little bit at that point.
My weight it up to 195lbs. I’m doing well in most of the workouts that Laurie designs and I’m eating considerably well. There are still only 2 side effects that I’m dealing with and that is the neuropathy and the dry mouth. I’ve been attending the once a month SPOHNC support group meetings and learning some things while also trying to help out others in my position.
On a different note my Oncologist is retiring this month. I would like to thank him for his key role in participating to extend my life. Thanks Dr Moore and enjoy your retirement.
Well my ENT Dr didn’t care for the results of the PET/CT from May, so he ordered a new scan. I went in and did a new scan on July 7th and heard back from the doctor last night. The results are that the scan was 100% clean. No signs of any cancer in the neck or otherwise.
Now we just have to plan the “Cancer Free” party. I’m guessing it will be some time in August, but we’ll see when time allows.
I see both doctors again in September, but the next scan is scheduled for November. Then there will be another scan in the March time frame of 2010. That will mark the one year anniversary of the completion of my treatment. I’m told that 80% of everyone that recurs has it happen in the first year, so if I can make it through the next 2 scans clean then my odds are pretty good.
My weight is holding pretty steady and even climbing a shade. I’m finally up to the 180lbs mark and exercising several times a week. There are really only 3-4 side effects remaining and the worst of those are the neuropathy in my feet and the dry mouth from the damage to my salivary glands. According to doctors both of these are supposed to subside at some point in the future, but they are not short term. The other things are trivial like some slight difficulty swallowing and my inability to grow facial hair my neck. The hair thing doesn’t bother me too much, but it is really bothering Laurie.
The next report will probably be in either September or November. God willing I’ll be passed this in no time.
Well we got word today that I’m scheduled this Friday morning to have the port removed. That truly will feel like the end I think. The exercise is starting off sluggish as expected, but I’m actually able to accomplish my moderate goals so far buy viagra online canada with mastercard. I’m really hurting all over today and will probably take the day off to try to get some of this lactic acid out of my muscles, but God willing I’ll be back at it tomorrow. Like anyone you just gotta get through the first couple weeks.
Well after waiting so long for the results and not being totally satisfied when they did come I lost some of my mental fortitude. However, I bounced back quickly and Friday Laurie was kind enough to pull the “PEG” feeding tube from my stomach. I hadn’t used it in more than three weeks and I was just plain tired of it. Of course the doctors said they would “call the GI and see when it could be removed”, but the internet is a beautiful thing. After just a few minutes of research by Laurie we came to the conclusion that we could do it ourselves. First I tried, but with no success. It’s not surprising really since I was sitting up and looking straight at a tube extending from my body while yanking on it. We changed our strategy and I laid down to disengage what little stomach muscles I do have. Then Laurie gave it the old “heave ho” and before I could protest from the pain it was out. I went part of the weekend with gauze and before you know it I have a new scar that I can make up a dramatic gun fight about. Sorry about the hairy stomach and pale white skin in the picture, but how else am I supposed to show off my new scar.
The next step is to get the access port removed. There won’t be any home remedies for this however. It requires a minor surgical procedure, but shouldn’t take very long. I’m going to call the doctor’s office and see what the hold up is on getting that scheduled tomorrow. I get the feeling that it will really feel like the end of this treatment era to me, but we’ll see.
Getting to the topic of the post title I began a new era today by resuming my exercise plan. I couldn’t hang with the rest of the crew for obvious reasons, but Laurie made me up a special little workout for me to do. Overall I was pleased with my effort and results. I managed to eek out 20 pull ups, 40 push ups and 60 air squats in 7 minutes. It was broken up into 4 rounds, but those are the totals. Going forward I’m not sure if Laurie will keep me on my own routine for a little while or just work me in with everyone else and scale it back for me, but since the exercise has begun I’m kind of excited about it. I’m sure I’ll be back in good form by summer’s end and competing with everyone else.
The doc finally called, Doug has what is called mild uptake in the back of the throat on the right side. This means that there is something causing the uptake whether it is tumor or inflammation or radiation changes, unfortunately they can not tell us which it is. The doctor thinks that it is due to radiation changes since the uptake measurement is considered “low” and therefore feels that the scan is “basically” normal. They want to rescan him in 3 months to be sure that the uptake they see now is gone. In the mean time he is going to go back to see the ENT specialist who is most likely going to put a camera up his nose and down his throat and get a close look at things. This is really cool since Doug and I will be able to see the changes that have happened back there since he started treatment. The doctor took photos of the original tumor when he biopsied and diagnosed him back in November. I imagine he could re biopsy any “suspicious” areas if he happens to see any. They are going to set him up to have his feeding tube and port removed next week which is great!! He has not really used his food tube in a couple of weeks, he is completely off the Duragesic pain patches and doesn’t need the port since he is not on chemo/hydration anymore.
So while it is not bad news, it is not really what we were hoping to hear. Not really sure about having a cancer free party now, we may wait until the next scan. Or we could have a “basically” normal party! ha ha!!
Okay, scan was done on Monday and now we are waiting for a call from the MD. I already called the MD office to see if the results are in yet and left a message. I will update the blog once we know the final answer. I am sitting on pins and needles and every time the phone rings my heart jumps! agh!!
Doug is in the process of coming off the Duragesic patches, which controlled his pain. He has gotten tired of living by the patches, two good days one sluggish blah day. The pain is under control, he is only in pain when he eats, and Lortab taken before eating has helped this pain. He is still very skinny, but is trying very hard to eat enough to gain some weight. He is eating child portions of food, and it takes a long time to eat that child’s portion of food. Right now, he is on day 5 of his “detox”. . . the patches are good for 3 days and the doctor said that the best way to get off them is to leave it on for longer and longer periods of time. He is tired, having some nausea with occasional vomiting due to the detox, but otherwise doing well.
On Monday he is scheduled for a CT/PET scan to see if he is cancer free or not. He will be able to remove the port he has used for chemo/IV fluids, etc, and the stomach tube if he is tumor free. He is not sure if he will take the stomach tube out right away since it is useful and painless for getting calories. He has found that he can drink Ensure so once the tube comes out, he can continue drinking that to add calories.
I will keep everyone posted next week with the results of the CT/PET scan. Wish us luck!
Things are slowly turning around for Doug! He has good and bad days, but the good days are now out numbering the bad days. The last doctor visit was last Thursday and he started that day with a vomiting spell and felt bad most of the day. We waited an hour and a half before seeing the doctor, which did not help his mood. His weight dropped to 167# when they weighed him, which is 13# down from the last visit 2 weeks prior. They believe he has a thrush infection in his throat, which may be contributing to the vomiting. His thick stuff in the back of his throat is something you cannot digest. The doctor said it is like having a hair ball, you cannot digest it, so you have to cough it up. He starts coughing and cannot stop, which leads to the vomiting. However, since last Thursday, he has not vomited, has increased his eating and his mood is getting better. He is on a schedule of eating something (anything) every 2 hours and we are hoping this will put some pounds on him. He still has pain in his mouth, but it is tolerable and he is able to eat real food now in between his canned food. He still gets easily fatigued, and is still healing, but it does appear that things are getting better!!
Today, Doug got up, ate some donuts, packed a can of food and headed off to work! He was in a good mood, and was feeling good today! He is going to try to work half days “at work” and do the second half of his work at home. Each day he getting closer to getting back to normal. His hair is coming back in and I am looking forward to his beard growning back! he he!!