middlesister1

Dear Patti-

Although we were tempted to keeping attacking with chemo, once all the tumor was dead , the ONC said why do chemo- how would she measure effectiveness if there was nothing to kill with it? I am not a doc, but do know that chemo is not good stuff for the body, so I would definitely get a second opinion on if you should continue or save it for if anything comes back.
Dr. M was always there for us to reach out to and the docs at MD would comment on that he was the best at reading the scans. When our ONC ordered scans, I would email Dr. M and he would take a look rather just have us going on staff’s reading. I would highly recommend at least sending him your scans and asking him to read them- pretty sure he would do that without a “consult”. And, if you want to have me drop him a line first, let me know. We get scan results for Mom today so I will be emailing him this evening to share the results.

Good luck,
Catherine

Dear Patti,

Although very hard to do, please try and look at Feb 2018 as possible party date to celebrate how wrong the doctor was. We get scan results tomorrow for Mom, and we’re almost at 4 years since diagnosis ( Oct 2013). I had a hard time understanding the “size” of the tumor. They gave us measurements, but at least for Mom, it wasn’t a nice symmetrical mass that was easy to measure. And, even after the second Y90, there was tissue there, but all necrotic. We are ok with dead tissue hanging out- just because they can still measure it, does not mean it’s viable. She took oral chemo for 2 weeks after second Y90, but since then has not had chemo. Are the smaller tumors still active? If not are they considering letting him stop the chemo?

One note if you ever need a second IR opinion- My Mom;s IR (Fred Moeslein) moved to FL- he’s now at Sarasota Memorial-
he said to feel free to direct patients in his direction, and just as when Ihe was at Maryland he is willing to patient’s records before I meeting to spare them a trip if he can’t help.

Take care,
Catherine

Brigette-

My mother had shrinkage with her first Y90 treatment, but it took a second treatment ( in conjunction with oral chemo) to kill what viable tumor we could see. In fact, one of her doctors said his goal was never to kill it all, but the second doctor aimed high and got us there. Our approach was to attack while we could ( journal article I saw with success was TACE) and so far we have been fortunate. We were also told not a cure, but going on 3 years treatment free. I am happy to hear your ONCs are willing to do multiple treatments- we had to push for it and so glad we did.

Best wishes for great results,
Catherine

Dear Julie,

You are a fighter, but I am so sorry you aren’t able to just revel in the great report on the CC and focus on living and grandkids. I hope that in the near future, you get that luxury.

Love and hugs are coming your way-

Catherine

Katrina,

Thank you for sharing the great news and information.

I look forward to hearing about continued great results.

Best wishes,
Catherine

Marion,

We start off or marked posts with sensitive- maybe this should be sensitive for political reasons. I will caveat with that until the last year, I kept my mouth shut most of the time, but could also enjoy an intelligent discussion debating what is the best way for government to work. I always found it interesting to learn more and see other views. However, all I see now is a health bill ( and environmental policies) which will negatively harm many people and the planet.

I appreciate these posts ( along the lines with ASCO saying senate bill is very bad)

There are some who rely on a limited number of new sources and may not see things from all angles.

I think FACTS are 22 million will lose health insurance (some republicans claim ONLY 10 million- guess that’s ok)
Before Obama care, 60% of employer policies had lifetime limits- these could be reinstated
Bill would give a $720 billion tax-cut to the very wealthy ( by cutting medicaid)

Only 17% of people support this bill- so why are they trying to push it through?
The basic foundation for success is there with Obamacare, and the States that supported it and expansion of medicaid are doing well. However, this uncertainty is making thing worse. Obamacare should be tweaked to improve, but should not be repealed by those who want to cut taxes for the wealthy, or just can’t stand anything tied to Obama. I ‘m sure it’s not as prevalent as reported, but so sad that there are people who want to see Obamacare repealed, but like the ACA health insurance they were able to get. I listened this morning to a doctor from NH who said they have seen over 1 million new people in the health system since Obamacare went into effect. Overall it costs the state less and they end up with a healthier population.

They will be offering senators financial incentives ( money towards campaigns) to vote to push this through. I would ask all to please not just listen to tweets, but find out what this bill will do to you and your loved ones. Then, please write or call your senators.

People will die if they put this through- not fake news.

Warren Buffett revealed that he would save nearly $700,000 in taxes every year if the GOP repeal bill passes and said Republicans should just rename it the “Relief for the Rich Act.”

It’s not a health care bill. It’s a massive redistribution of wealth from low-income Americans to the rich.

Catherine

Taylor/Positivity,
I have to admit that although I’m sure it’s healthy for the body, I am surprised that an ONC said you must cut out sugar and wheat products. I have no doubt that env factors and food additives contribute to cancer and other illnesses we see( the science stuff that is not allowed these days), but once the cancer has taken hold, I have seen less about how environmental and/ or diet influences disease progression. My mother is doing great four years since diagnosis, and this was never brought up to us. We were told common sense things since liver was compromised . However, a few months after the Y90 , our radiologist said Mom should enjoy vacation to FL and enjoy a cocktail during the sunset (of course in moderation) I am not a medical practitioner, but I can understand that keeping healthy diet gives the patient a better chance of being up to the stresses put on the body from treatments. And, I’m sure certain foods are more nutritious and easier on the body for digestion.
However, I worry that patients would think diet will affect progressions of tumors. I would be interested to know if there is any scientific evidence to say that diet could affect how the tumors respond to treatment or could slow/speed up progression. And, I guess I’m sensitive since we lost Dad to cancer this year as well, but we were never told/led to believe that changing his diet would have changed his prognosis or how the disease progresses. I am 99.99% sure that changing his diet would not have changed his progression of disease or quality of life. Life is hard enough when dealing with CC- I just want to make sure we are not needlessly telling patients that they can no longer enjoy the things (foods) they like without just cause.
Please forgive me if I am way off base- I hope people can chime in with knowledge on this subject.
love and best wishes to all,
Catherine