My Journey Beating Cancer

We are trying to manage it with meds and the pain is lessening.From a solid nine I'm now at a solid 7. Problem is that we didn't get in front of it. The whole thing escalated so quickly. I didn't see pain management till 5 days after discomfort turned to excruciating.Seeing radiologist tomorrow but my guess is that it will be another week or more before they resume. This burn pain seems so much worse then any of the post surgery pains I've experienced. Thanks.


Best wishes georgieboy, jeff and lisat.

lisat - We have very good friends whose son is in the gastrointestinal cancer unit of the Dept. of Medical Oncology at Dana Farber. He also is an assistant professor at Harvard Medical School. Good luck!



Thanks everyone. I hope jeff is doing as well as can be expected.

Georgie, why do you think the burns happened? Is it unusual? I hope the painkillers start to work better.

cramer said:

Best wishes georgieboy, jeff and lisat.

lisat - We have very good friends whose son is in the gastrointestinal cancer unit of the Dept. of Medical Oncology at Dana Farber. He also is an assistant professor at Harvard Medical School. Good luck!

Cramer, maybe your friends' son will be consulted on my case. It was complicated explaining that the current issue was breast cancer but I also wanted to know what the followup protocol is supposed to be for someone who's had colon cancer. When I read a 'screening' every two years for instance, is it an MRI, colonoscopy, blood test? Annoying that it's so hard to get this information.


lisat - I private messaged you.


All of you are in my prayers! You are all so strong so I know that will help you in this journey.


It is not the norm. My treatment included having my thigh wrapped with a "bolus", which is a clear, plastic wrap which increased or magnified the radiation I was getting.This was needed because of the size of the tumor [3" x 7"] and because it was so close to the skin. At first it was only redness,kinda like a real mild sunburn. As time went on,the thigh got redder and redder and more tender to the touch.The team was aware of all this and in fact had cautioned me that the chief side effect was a sunburn which could get bad. Then it turned dark red with some areas black.We monitored it and I used an OTC cream and then an Rx cream which both proved ineffective.A week ago Fri when they saw it, we decided to go ahead with the treatment that day and I would meet back w Dr.on Mon. Over the weekend everything started cracking and opening up and when I saw Dr on Mon, she suspended treatment and we started w Silverdine cream and sterile wraps. Much like taking a roast out of the oven to finish cooking, my leg had some cooking of its own to do after we stopped radiation. I only have 7 treatments more [out of 35] and would like to be done before Christmas. Thanks. GB



lisat, have you considered finding another doctor? From what I understand, you had colon cancer yet you are not sure what the required follow up is? That is really frightening.

lisat said:

Thanks everyone. I hope jeff is doing as well as can be expected.

Georgie, why do you think the burns happened? Is it unusual? I hope the painkillers start to work better.
cramer said:

Best wishes georgieboy, jeff and lisat.

lisat - We have very good friends whose son is in the gastrointestinal cancer unit of the Dept. of Medical Oncology at Dana Farber. He also is an assistant professor at Harvard Medical School. Good luck!

Cramer, maybe your friends' son will be consulted on my case. It was complicated explaining that the current issue was breast cancer but I also wanted to know what the followup protocol is supposed to be for someone who's had colon cancer. When I read a 'screening' every two years for instance, is it an MRI, colonoscopy, blood test? Annoying that it's so hard to get this information.




georgieboy said:

It is not the norm. My treatment included having my thigh wrapped with a "bolus", which is a clear, plastic wrap which increased or magnified the radiation I was getting.This was needed because of the size of the tumor [3" x 7"] and because it was so close to the skin. At first it was only redness,kinda like a real mild sunburn. As time went on,the thigh got redder and redder and more tender to the touch.The team was aware of all this and in fact had cautioned me that the chief side effect was a sunburn which could get bad. Then it turned dark red with some areas black.We monitored it and I used an OTC cream and then an Rx cream which both proved ineffective.A week ago Fri when they saw it, we decided to go ahead with the treatment that day and I would meet back w Dr.on Mon. Over the weekend everything started cracking and opening up and when I saw Dr on Mon, she suspended treatment and we started w Silverdine cream and sterile wraps. Much like taking a roast out of the oven to finish cooking, my leg had some cooking of its own to do after we stopped radiation. I only have 7 treatments more [out of 35] and would like to be done before Christmas. Thanks. GB

I'm glad you are getting close to being at the end of this radiation treatment. Sounds painful. I hope it heals quickly and well!




conandrob240 said:

lisat, have you considered finding another doctor? From what I understand, you had colon cancer yet you are not sure what the required follow up is? That is really frightening.

lisat said:

Thanks everyone. I hope jeff is doing as well as can be expected.

Georgie, why do you think the burns happened? Is it unusual? I hope the painkillers start to work better.
cramer said:

Best wishes georgieboy, jeff and lisat.

lisat - We have very good friends whose son is in the gastrointestinal cancer unit of the Dept. of Medical Oncology at Dana Farber. He also is an assistant professor at Harvard Medical School. Good luck!

Cramer, maybe your friends' son will be consulted on my case. It was complicated explaining that the current issue was breast cancer but I also wanted to know what the followup protocol is supposed to be for someone who's had colon cancer. When I read a 'screening' every two years for instance, is it an MRI, colonoscopy, blood test? Annoying that it's so hard to get this information.

I agree. I like the doctor but I am questioning why I don't have a clearer idea of screenings. I know that one of the ways I got through this emotionally was to sort of close my eyes, and stay on autopilot, because I am a hyper anxious person who over researches, etc. But at this point with the diagnosis 4 years ago, I need to get braver and make sure I don't fall through the cracks.


in my own experience over the past 7 months with my husband's two life threatening kidney infections (sepsis) my one piece of advice to you is always have someone with you when speaking with your doctor, it can be a friend or relative -- this extra set of ears will hear more than you will recall or be able to fully process.

Also bring a note pad with the questions you think of before you see the doctor. Take notes -- I believe doctors actually appreciate an informed patient who will work determinedly with him/her in the treatment plan.

I will add you to my prayer list -- which appears to get longer each day


Lisat, not ignoring you!! Just trying to pin down the right info grin


Have you had regular CEA blood tests?

lisat said:

Thanks everyone. I hope jeff is doing as well as can be expected.

Georgie, why do you think the burns happened? Is it unusual? I hope the painkillers start to work better.
cramer said:

Best wishes georgieboy, jeff and lisat.

lisat - We have very good friends whose son is in the gastrointestinal cancer unit of the Dept. of Medical Oncology at Dana Farber. He also is an assistant professor at Harvard Medical School. Good luck!

Cramer, maybe your friends' son will be consulted on my case. It was complicated explaining that the current issue was breast cancer but I also wanted to know what the followup protocol is supposed to be for someone who's had colon cancer. When I read a 'screening' every two years for instance, is it an MRI, colonoscopy, blood test? Annoying that it's so hard to get this information.




eliz said:

Have you had regular CEA blood tests?
lisat said:

Thanks everyone. I hope jeff is doing as well as can be expected.

Georgie, why do you think the burns happened? Is it unusual? I hope the painkillers start to work better.
cramer said:

Best wishes georgieboy, jeff and lisat.

lisat - We have very good friends whose son is in the gastrointestinal cancer unit of the Dept. of Medical Oncology at Dana Farber. He also is an assistant professor at Harvard Medical School. Good luck!

Cramer, maybe your friends' son will be consulted on my case. It was complicated explaining that the current issue was breast cancer but I also wanted to know what the followup protocol is supposed to be for someone who's had colon cancer. When I read a 'screening' every two years for instance, is it an MRI, colonoscopy, blood test? Annoying that it's so hard to get this information.

No I haven't, Eliz. In the beginning for a year for so after diagnosis, I had the test regularly. Most recently I had a CBC and CMP that were normal, and this because I asked my PCP to do something about screening me for recurrent colon cancer away from the primary site. I see from a little research that I should have been having a CEA blood test every three months for the first three years. The last time I saw my oncologist for an office visit was spring 2015, (2.5 year mark) and I may have had the blood test then in preparation of the visit, but I don't remember. I was seeing him to go over abdominal scan results.

Thank you for mentioning this, and I will need to follow up. The question is do I find another oncologist, perhaps one that is in Boston? I cancelled the second opinion with Dana Farber because it doesn't include pathology.

Is there a tumor marker blood test for breast cancer and any related cancers? I'll need to make sure I am following up on that too.

My PCP sent a message that he is adding it to my list of labs, and he wondered if perhaps the medical oncologist didn't give me the test recently because of the risk of false positives. I'm not sure if he is saying, yes, there are false positives or not. I didn't query.



I'm back home! There is a lot to go over and there is no way to cover it all in one post but I will get some updates out there in the next couple of days. First of all, in their attempt to prepare me for the pain that I would experience, they were not even close in preparing me. But nobody could have prepared me because it was indescribable. Up until this procedure, the most painful thing that I remembered was the passing of a couple kidney stones. So if what I just went through was a benchmark 10 for pain, I would now view the kidney stones as a 4 at the very most.

For the first 24 hours after the procedure, I was kept under anesthesia and it was by far the best 24 hours of the process so far. When I came to, I had set up signals as to how I would communicate with my wife to let her know my level of pain, and I found myself in a panic because I had not covered anything like what I was experiencing. Anyway, the next few days after that are probably not the clearest in my mind since my mind was clouded with both pain and medication. Although as clouded as my mind was, I feel like for every hour of my life, I absorbed 6 hours of information because time has never passed so slowly.

Anyway, I need sleep And I'm sure that I can find time to post more tomorrow.


Glad you're back. I was starting to worry. I hope tomorrow is a better day.


jeffhandy, sending my best wishes for healing, as quickly and completely as possible.


Jeff, I'm very relieved to hear from you, but I'm so so sorry about the pain. I hope there is a good plan in action already to help you deal with it? Feel better soon. You, GeorgieBoy and LisaT are in my thoughts every day.

LisaT, I would pick a doctor and go in with a list of your questions written down. And if they can't answer them all to your satisfaction, try another doctor. Get recommendations and referrals and keep following it up the food chain, until you get the information you need.

Best of luck to all of you. I'm so sorry you're going through this.


We need to strongly advocate for ourselves. I found it helpful to compile a file with copies of all my labs, scans,etc.Taking notes during appts help, and writing questions out to ask, but nothing compares to taking someone with you that can listen and jot down info.All the best. Extreme pain can be demoralizing and I pray that yours lessens by the day.


Came across this thread and I admire the support network this community has created.. I also wanted to share a link for this organization, which pairs people with volunteers who have undergone similar diagnoses .. http://www.cancerhopenetwork.org/



I know it has been a while since I posted but my mind has been occupied along with my body. I have weaned myself off the painkillers so it is now just an occasional Tylenol. I'm feeling a lot better and stronger. It certainly is not where I would like to be but it is way better than where I was a few weeks ago. One of the side effects of the surgery was blood clots in my leg so my mobility has not been the greatest. I could not go on blood thinners since I was still healing from the surgery but I finally got the go ahead and I now have to give myself injections twice a day. I would have preferred a pill but you do what you have to do. I think I have seen doctors more in the last 6 weeks than I had seen in the past 6 years. Great place Sloan, they really make you feel confident about your treatment.

I plan on trying to enjoy the next 2 weeks, after that it is radiation treatment which will lead to more misery. But it is all part of the plan for a long healthy life. I had a chance to do a simulation of the radiation treatment the other day, it is a strange experience. They made a mask that covers my head and chest (eyes and nose are open) which is designed to keep me in the exact same position each time I go through treatment. I have gone through 45 minute MRI sessions and that does not bother me, but being strapped down with no ability to move is a bit different of an experience. That first session was a bit longer than the treatments will be and after about 20 minutes I started wigging out a bit. Hopefully I will get used to it and deal with it better next time. They say that typically I will be strapped down for only 10-15 minutes so that is a relief.

I have been trying to maintain weight but have lost about 25 lbs even while getting 80-100 grams of protein a day. I can't complain too much since I was about 40-50 lbs more than I really should have been. But it is not the best way or time to be losing the weight. And they say that during the radiation there will be more weight loss. So I have to pig out now but avoid maintaining those habits after I get better.


Glad things are looking up!


I'm wondering if you could use headphones or ear buds with soothing, distracting music or podcasts during the sessions without getting in the way of the treatment area.

Enjoy the holidays. wink



musicmz said:

I'm wondering if you could use headphones or ear buds with soothing, distracting music or podcasts during the sessions without getting in the way of the treatment area.

Enjoy the holidays. wink

They actually have a sound system so that I can do that.


Good for you. I completed my radiation 3 weeks ago after a 2 week suspension due to severe radiation burns which was due to the level of radiation they had to use and also the area that needed to be covered.Overall, the treatment wasn't too bad although laying on your back with your man junk wrapped in a sling and pulled out of the field of radiation was a little uncomfortable. Same thing with a mold that my legs would go in and tattoos which allowed them to align me exactly the same each time.Treatment itself lasted maybe 10 - 15 minutes.Did a 7 week protocol which I understand is standard. Hopefully you'll acclimate to it quickly. I have found that with both of my experiences, that the staff at these places are special folks with a large degree of compassion and really go out of their way to make the whole experience as comfortable as could be. Good luck to you and may God bless.


Lisa and George and Jeff, I'm so sorry for all you're going through. Keep up the good attitudes. They will take you far.


God, you guys are so strong. Just the descriptions make me feel weak-kneed. I am fervently wishing all three of you a total remission for life, after all you are doing to reclaim your health.


I'm reading research about better targetting for even more effective treatment via fast radiation bursts, and customised chemo. Here's hoping the results are widely available quickly!

Wishing you all happy and peaceful time with loved ones this holiday season; may your new year bring joy, good health, greater resilience than you knew you had, great good humour, wonderful new friends and exciting adventures with old ones...

With love, always.... From all of us Downunder

(We're learning not to panic between scans: the CAT scan shows a liver mass, but the PET scan doesn't...every single visit)


Well, I'm feeling pretty good and have put some lbs. back on. The tongue and the neck feel a little weird because with some of it cut out on one side, the healing tightens up that side. When I stick out my tongue,(part of rehab exercises) it does a little twist because one side is less restricted than the other. Also have some weakness in the left arm from some nerve damage from the neck surgery. But all in all, this is the best I've felt in a couple months.

Radiation starts next week, I'll try to keep everyone posted as it moves along. But recent history suggests that when the misery starts again, the posts may stop for a while.


Radiation has different side effects than surgery and chemotherapy. You might find them to be milder. I hope so.


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