Posted by Lacey_adminCCS on Aug 21, 2016 11:40 am
how long post treatment are you?
Posted by Will Dove on Nov 2, 2016 9:40 pm
Due to being an extreme fitness nut I am otherwise recovered and back to working a full day, however I am unusual in that regard. I have met people who are 1 year post treatment and still can't work more than 4 hours a day.
Posted by Calvin on Aug 13, 2017 2:06 pm
Posted by Lacey_adminCCS on Aug 14, 2017 11:43 am
Posted by nimo on Jan 16, 2018 1:14 pm
Posted by Lacey_adminCCS on Jan 17, 2018 4:53 pm
Glad you found us and jumped right in with your question that is great!
What treatment plan has your Oncologist recommended? Your Oncologist is the best person to help you make an informed decision carefully weighing your options and what works best for you. They should be able to give you an idea what your prognosis is with and without Chemotherapy.
We are here to listen and support you along the way!
Posted by ssharpie on Apr 9, 2018 8:53 pm
Posted by Lacey_adminCCS on Apr 9, 2018 9:09 pm
Posted by StacyH on Jun 2, 2018 8:03 pm
Thanks for all the posts they really help me get through this.
Posted by Bubbav on Jun 19, 2018 2:04 am
Posted by Brighty on Jun 19, 2018 7:16 am
Posted by Iluvny on Jun 19, 2018 12:32 pm
Posted by ypsimac on Jul 4, 2018 5:09 pm
Posted by Lacey_adminCCS on Jul 4, 2018 5:36 pm
Welcome to the community. Thank you for sharing your experience with recovery 7 weeks in. Best of luck with the symptoms your experiencing and fingers crossed for a clear scan.
Where did you have your treatment?
Posted by ypsimac on Jul 4, 2018 9:33 pm
I had my treatment at the University of Michigan comprehensive cancer center in Ann Arbor, MI. I live about a mile from the center, so I was very fortunate to be able to get to my treatment in a very short time and be home very quickly. I really appreciate the blog and hope that others may get the support they need to successfully navigate their treatments. It has some of the more unique and heartbreaking side effects in the world of cancer. Support from those who have experienced is essential for those who are just beginning their journey.
Thanks for your thoughts and hope for my upcoming scan, I hope that you and all who have to face the specter of cancer of any kind, may find their way to positive results.
Posted by JamesT on Jul 4, 2018 9:41 pm
You were very fortunate you only needed morphine for 1 week. I went through the chemo and radiation and finished last September.
I certainly needed the morphine pills to help with the pain. And while the pain was bad in my throat and surrounding area, the most painful was a very nasty canker sore on the side of my tongue. This started very early in the treatments and just got worse and worse....
Was so thankful once everything was done and the healing started.
The salt soda rinse must be so painful. I had to stop those early in the process. Was only able to do the medicated rinse that was developed by the pharmacy at the hospital.
I remember I was feeling anxious as well pre - pet scan. While it's not 100% guaranteed, you are through the worst and the probability is very very high that the cancer is gone. It will be great once you receive that confirmation.
yes staying positive does help.
I also had trouble sleeping as well....I'm up reading quite a few times during the night...and i can't get out of bed early in the morning...it's more like 9:30 to 10:00am.
I'm 9 months post now and still a very dry mouth....so looking forward to getting back to normal. Hopeful this is not the new normal, but if it is...it is.
Posted by BS123 on Jul 29, 2018 12:13 am
Posted by JamesT on Jul 30, 2018 12:16 am
congrats on your clear pet scan.
Thankfully I was able to get through without a feeding tube....but if I had to get one I would have.
I just had my 9 month check up this past week. Everything looks good.
But surprisingly enough I can still feel where my swallowing food is not at 100%. I don't have any pain with foods, but I can still feel it. The recovery is a long one. I actually get worried it will come back.
How did you know you had a potential issue in the beginning? For myself it was a lymph node on my neck that started protruding...and that eventual led to a biopsy and results that showed it was cancer. Then a scope in my throat food the primary cancer which was my right tonsil. And I never felt anything in my throat.
Posted by ypsimac on Aug 14, 2018 8:05 am
Posted by DaveClauser on Sep 20, 2018 9:10 pm
Thank you for putting the treatment into words. I tried several times to put my chemo and radiation treatment into words but simply could not describe how horrid the treatment was. You are correct that anyone who has not endured the treatment simply cannot comprehend how horrid it is.
I turned 63 last August and my cancer was discovered in February 2018 during a routine physical as a lump on the right side of my neck. After all the tests it was a tumor (HPV-16 positive) in one lymp node. The primary origin was never found and my doctors say it most likely started in the base of my tongue and my body killed the primary origin. My tumor was removed in March and I was able to get through the treatment without a feeding tube and a minimal amount of painkillers. I did put on some extra weight before treatment but I lost 40 pounds during the treatment.
.My adult children told me at the start of the treatment that I am one tough guy and that I would be fine. They were correct but the treatment took me to my knees even though I have always had a high pain tolerance and level of mental toughness.
I am 4 months out from the end of the treatment and things are getting better but my taste and saliva production has along way to go. My PET scan the end of July was clean and the doctors are confident I am cured but there is no guarantee. I am moving forward with my life and enjoying being am back on golf course and enjoying my other activities again.
While things are getting better everyday, I have trouble talking to people about the treatment as it is just too painful to talk about.
To sum things up, at a follow-up visit with my surgeon after my treatment, I asked him how he thought I was doing and his response was "considering we tried to kill you with the cure you are doing better than most".
All I can say is we are survivors!
Posted by Lianne_adminCCS on Sep 21, 2018 12:28 pm
Your post will not doubt help someone else who is just starting out on a similar path
Have a great weekend
Posted by Will Dove on Sep 21, 2018 4:45 pm
But, we're alive and we survived it. The strong ones will come out better people for the experience. I sense you are one of those.
Posted by DaveClauser on Sep 23, 2018 8:55 pm
Thank you for your kind words.
Once my son read your write-up of the treatment, he realized just how rough the treatment was and what I went through.
Without my wife's help I do not know how I would have made it through the treatment. When she read your write-up she said it was very accurate as it could get.
I had 2 cisplatin treatments. They did not do the 3rd dose as the 2nd dose almost did me in. A week after the second treatment I became very dehydrated and passed out when they were taking a blood sample. I spent 2 days in the hospital getting stabilized. I had 27 radiation treatments that ended May 16th.
I feel my recovery did not start until Memorial Day weekend.
As stated earlier my taste and saliva production is slowly coming back. I hope the pace of their return speeds up but it will be what it will be.
I lost about 25 pounds of muscle mass from my arms, legs and chest. My weight has been stable for about 2 months and I am trying to get this muscle mass back. I am exercising more (low weights and cardio-exercise) and now I am having trouble maintaining my weight because I just cannot eat as much food as I did prior to treatment. I watch my calorie and protein intake to make sure I eating enough.
Do you have any advice how I go about replacing this lost muscle mass or am I just expecting too much too soon?
Just looking forward to many good days ahead.
Posted by Dthielen on Sep 24, 2018 6:29 am
I was on 2mg of hydromorphine every four hours but it wasn't doing anything, and the doc said take as much as you need. well I needed 8 mg to get a single ensure down. At that point, the ensure burned just as bad as the radiation, and it tasted like hell. Every swallow of Ensure had to be washed down with lots of water to get both the taste and the burn down.
I am still weak - which is to be expected after losing 70 pounds in only two months and I don't like picking up my 3 month old son because I have a real fear of dropping him.
Now the good stuff - yes Virginia there is good stuff. First is that my family doc is surprised at how well I have handled it all. I put that down to years in the military and learning you don't have to like it, but you do have to do it. From diagnoses last February till now I am down 90 pounds. 70 of that came off between June 15 when radiation started and now. I can actually bend over and tie my boots without it being a struggle. I'm down to a 30 inch pants, something I haven't fit into since high school and I'm 64. Prior to treatment I was on 2500 mg of Metformin, plus two gliclazide, for my blood sugars. I am now off of them entirely. I was on three different blood pressure medicines, and still blood pressure was 140/100. Now off of all my blood pressure pills and I'm running at 120/80. From18 pills a day, I am down to 2. One for acid reflux, and one for prostrate. Which is the next possible sour note, because my PSA is where they suspect I may have prostrate cancer now. But I'm not doing anything about that until after my PET Scan which is scheduled for November.
They pulled all my teeth prior to treatment - and that is when I lost my taste, well before radiation even started. But it is now pretty much all back, and while I am still getting most of my nutrition from Ensure, I actually was able to ENJOY yesterdays roast beef dinner it seems all of my taste is back. But it is a real pain to eat real food - even soft. It feels like taking sandpaper to the roof of my mouth and to my throat. However I can taste it. We joked at the start, (when they took my teeth and told me I had to go at least six months with no teeth before I could go in for dentures) that my little guy and I would be learning to eat solid foods together. And although he is just over 4 months old he has his first tooth and with the help of a hand blender smooshing it all up - he had the same roast beef dinner I did.