Maintenance Therapy??
I asked her "if she was waiting on liver failure or something" for me, and she said "No, people live with this for years, waiting for enough shrinkage?"
But man, thinking of doing more chemo has got me bummed, I could be on this forever, she thought juicing was a great idea, and I would benefit with all those nutrients, still wants me to take a multi-vitamin and B-complex supplements, but I'm now wondering, if I should even go for a second opinion...
I want to go to Sloan-Kettering, but I can't afford it, is there free lodging around that hospital area, or free airlines for Cancer patients, or even discounted? I don't know if I need a second opinion, since she's supposedly a top oncologist who specializes in the colon, but don't want to get her mad going to another either.
I don't know what to do, I just hate to think I'm on chemo forever.
Hugsss!
~Donna
Comments
-
Get a second opinion
Donna, is this onc also a surgeon?
I would really like to see you get another opinion on your options. I have had a gut feeling about your onc not being open enough to curative options for YOU.
Are you talking about Sloan Kettering in NY? My son in law was working for them until this past Monday and I can ask him about places to stay, etc. He commuted back to CT most days but knows the ins and outs of SK in New York. His Daddy is being treated there for advanced throat/ esophagus cancer.
I love you sweetie!
Diane0 -
Yes!dianetavegia said:Get a second opinion
Donna, is this onc also a surgeon?
I would really like to see you get another opinion on your options. I have had a gut feeling about your onc not being open enough to curative options for YOU.
Are you talking about Sloan Kettering in NY? My son in law was working for them until this past Monday and I can ask him about places to stay, etc. He commuted back to CT most days but knows the ins and outs of SK in New York. His Daddy is being treated there for advanced throat/ esophagus cancer.
I love you sweetie!
Diane
That would be wonderful! MY onc is not a surgeon, but would love to meet up with an excellent surgeon at the Sloan-kettering there in New York, my hubby wants to go as well, he thinks I should get a second opinion as well, I don't think she's being aggressive enough with it, and just doesn't want me in any kind of pain or suffering, she is wanting to wait till these tumors shrink down to nothing, but that may not even happen...she said my liver was just inoperable.
Hugsss!
I love you as well!
~Donna0 -
Second opinions and asking questions
I would certainly get a second opinion from a surgeon - but first I would ask your oncologist for more definite answers.
►HOW much more do the liver mets have to shrink for resection?
► OR is the problem that you have mets in every lobe, (they obviously can't take the whole liver).
►Or is the problem she feels the mets are still too large right now, but could shrink more and the be eligible for resection?
►What does she plan to use to shrink them enough so you can get resection?
Or is this even in her plans? And if not - I might also get a second opinion from another oncologist too.
It sounds like this is another time that you have to be an advocate for yourself, and push a little harder for the information you deserve, and second opinions if needed. Good luck - you'll find the answers and alternatives once you dig into this!0 -
I just...Kathryn_in_MN said:Second opinions and asking questions
I would certainly get a second opinion from a surgeon - but first I would ask your oncologist for more definite answers.
►HOW much more do the liver mets have to shrink for resection?
► OR is the problem that you have mets in every lobe, (they obviously can't take the whole liver).
►Or is the problem she feels the mets are still too large right now, but could shrink more and the be eligible for resection?
►What does she plan to use to shrink them enough so you can get resection?
Or is this even in her plans? And if not - I might also get a second opinion from another oncologist too.
It sounds like this is another time that you have to be an advocate for yourself, and push a little harder for the information you deserve, and second opinions if needed. Good luck - you'll find the answers and alternatives once you dig into this!
...seen her yesterday, and wish I would have asked then I do go back to her on Nov 18, my next chemo wont be till Nov 3, I took 3 weeks, since I didn't want to feel like crap for my kids being hooked up and feeling out of it for Halloween night, since my daughter has a band competition at Marshall University that day. Maybe I'll see if she will give me a call. I hear from so many of the nurses, doctors on her team and all that if they had colon cancer, they would all go to her, so am sure she is good, she does have a good reputation, but we'll see, a second opinion wouldn't hurt, and I want to go somewhere good. Maybe even the Cleveland Clinic, that's one of the top 12 hospitals in the world. I Just don't know the names of who to see, who are excellent in their field and all that.
Thanks Kathryn and Hugsss!
~Donna0 -
Hi Donna
I had a good liver surgeon make the call on my original liver resection. My oncologist thought liver resection was not an option. The surgeon thought differently and completed a successful 2/3 resection. I'm still here to talk about it today.
A second opinion, or rather a surgeon's opinion, may be good to get now. Your oncologist will not be getting "mad" over this.
Be well... Rob; in Vancouver0 -
I agree
with all the above posts. During this journey in your life, you NEED to take YOU first as well as your health. Get as many opinions as YOU feel comfortable with until you fine one that works with you and YOUR needs/health.
God has given us one life and one body, lets make sure we do everything in OUR POWER to preserve it
I would ask the American Cancer Society or even the Tourism Board of NY to see if there are any lodging places available for cancer patients who are receiving treatments at Sloan-Kettering.
I know Morgantown, WV has a home (no-profit) available for cancer patients that are receiving treatments at the nearby, forgot the name, in Morgantown. It operates on 100% donations and volunteers. Read an article in one of our local papers.0 -
Trust your gut
HI Donna,
Trust your gut, it seems to know the right direction huh? You should get a second opinion, you need to feel confident in the doctor and she being a professional should not be offended and anyhow who's life is it. I just switched oncologists, it was hard for me too. My old doc is supposed to be the best, but we couldnt seem to communicate well, I now have a new onc, we'll see how it goes. Take care, I hate to see you down, you are one of my inspirations on this board.... SENDING YOU A BIG HUG!
Lots of Love
Donna0 -
3 surgeonspokismom said:Trust your gut
HI Donna,
Trust your gut, it seems to know the right direction huh? You should get a second opinion, you need to feel confident in the doctor and she being a professional should not be offended and anyhow who's life is it. I just switched oncologists, it was hard for me too. My old doc is supposed to be the best, but we couldnt seem to communicate well, I now have a new onc, we'll see how it goes. Take care, I hate to see you down, you are one of my inspirations on this board.... SENDING YOU A BIG HUG!
Lots of Love
Donna
i had one GP say I was a goner...3 surgeons turn me down and the fourth liver sugeon said....let's do it!!
Major liver re-section in 2006....still here Donna yes....so what you have to do
hugs
~mags~0 -
Our son in law
Our son in law wasn't available during the day so Erin will ask him tonight but she said her mother in law/ father in law stayed at a place in Sleepy Hollow, New York while undergoing treatment at Sloan Kettering. She'll get the details and call me as soon as she can.
Hang in there girl!
Diane0 -
Thanks Diane and Mags!dianetavegia said:Our son in law
Our son in law wasn't available during the day so Erin will ask him tonight but she said her mother in law/ father in law stayed at a place in Sleepy Hollow, New York while undergoing treatment at Sloan Kettering. She'll get the details and call me as soon as she can.
Hang in there girl!
Diane
Mags, I'm so glad you went for more opinions, this is kind of weighing on me heavy here, I don't know how bad my liver is, but I have to find out, and Diane, I'd love to be where the Headless Horseman rides! Thanks for all the help! I wonder if Sloan-Kettering even takes my insurance, oh well, I have alot of calls to make!
Hugsss!!
~Donna0 -
Donna
Donna,
You are such a light to the board that I hope you can feel all the love and friendship that people have for you here. It is so obvious how well you are thought of.
About your visit....like it has been said here already, get an opinion from a LIVER SURGEON. At the end of the day only the surgeon will make the call, not the oncologist. My first oncologist said I was not operable and wouldn't likely be operable and you know how that turned out. My current oncologist recommends patients to the liver surgeon to review their scans. She works very very closely with the surgeons. When I am in her office I always see my cutie liver surgeon reviewing scans near her office. Does your oncologist work that closely with a liver surgeon? Has she presented your scans to him/her? As Kathryn stated, you want to know why she believes you are not operable. Someone on another board told me the oncologist told her she was inoperable because she had mets on 2 different lobes. Well phooey. That's not what I have read or experienced but she let his opinion stop her from getting another review.
About MSK...if you want to get a consult (either with the oncologist there or the liver surgeon) you should call their offices directly as opposed to going through the referral line. It will work much faster that way. If you are truly not currently operable have you thought of the HAI pump therapy as a way to get you there? I know we have posted on it before (Philleg and AdKer as well) so I know you're familiar with that technology. Please please look into it!!! If you need the numbers for the liver surgeon or oncologist at MSK PM me.
The first step (of course) is to see if you are covered under insurance at MSK. But even if you are not the oncologist is always doing studies and it is possible that you could work something out with her to be in a study arm. I am not sure, just a thought. If you are coverd by insurance you need to worry about lodging and flights. Hope Lodge is not far from MSK and allows you and your caretaker to stay at no cost. You have to book them in advance but they have a fantastic facility in NYC. I encouraged another liver met patient to travel to NYC to get HAI treatment (which she has and is doign fabulously with!!) and she and her husband stayed at the Hope Lodge. I went to see her there and the facility is amazing!!! Check out http://www.cancer.org/docroot/subsite/hopelodge/locations.asp for more information on the Jerome Greene Lodge.
As to flights....I have made a friend at MSK that travels in from Cincy about once every 5 weeks. He was originally inoperable and went through months and months of chemo in Ohio and was still not operable. He went to MSK for a second opinion. The day I had my resection he had his HAI liver pump placed. I remember him walking the hospital floor past my room even though we wouldn't really meet until I saw him at the outpatient facility weeks later. In any case he had about 3 HAI treatments and the last time I saw him at the outpatient facility he was recovering from a liver resection. He was sore but cancer-free. He takes Corporate Angel flights to and from NYC. Check out http://www.corpangelnetwork.org/. It is free and he told me he has flown on Procter & Gamble's private jet to/from NYC. He said one trip a marketing exec was on the flight with him and presented him with a huge basket of P&G products. I imagine there are other organizations that provide similar flight arrangements but I know this one has worked for two people I know.
If you need rides from the Newark or Teterboro or Morristown airports to NYC you can let me know. As long as you don't mind a minivan filled with cheerios and empty juice boxes I can get you there....
Don't let anything stop you Donna from getting what you need. And get on that juicing right away!!!
Amy0 -
Cherrios and empty juice boxes....You stole my truck...LOLmom_2_3 said:Donna
Donna,
You are such a light to the board that I hope you can feel all the love and friendship that people have for you here. It is so obvious how well you are thought of.
About your visit....like it has been said here already, get an opinion from a LIVER SURGEON. At the end of the day only the surgeon will make the call, not the oncologist. My first oncologist said I was not operable and wouldn't likely be operable and you know how that turned out. My current oncologist recommends patients to the liver surgeon to review their scans. She works very very closely with the surgeons. When I am in her office I always see my cutie liver surgeon reviewing scans near her office. Does your oncologist work that closely with a liver surgeon? Has she presented your scans to him/her? As Kathryn stated, you want to know why she believes you are not operable. Someone on another board told me the oncologist told her she was inoperable because she had mets on 2 different lobes. Well phooey. That's not what I have read or experienced but she let his opinion stop her from getting another review.
About MSK...if you want to get a consult (either with the oncologist there or the liver surgeon) you should call their offices directly as opposed to going through the referral line. It will work much faster that way. If you are truly not currently operable have you thought of the HAI pump therapy as a way to get you there? I know we have posted on it before (Philleg and AdKer as well) so I know you're familiar with that technology. Please please look into it!!! If you need the numbers for the liver surgeon or oncologist at MSK PM me.
The first step (of course) is to see if you are covered under insurance at MSK. But even if you are not the oncologist is always doing studies and it is possible that you could work something out with her to be in a study arm. I am not sure, just a thought. If you are coverd by insurance you need to worry about lodging and flights. Hope Lodge is not far from MSK and allows you and your caretaker to stay at no cost. You have to book them in advance but they have a fantastic facility in NYC. I encouraged another liver met patient to travel to NYC to get HAI treatment (which she has and is doign fabulously with!!) and she and her husband stayed at the Hope Lodge. I went to see her there and the facility is amazing!!! Check out http://www.cancer.org/docroot/subsite/hopelodge/locations.asp for more information on the Jerome Greene Lodge.
As to flights....I have made a friend at MSK that travels in from Cincy about once every 5 weeks. He was originally inoperable and went through months and months of chemo in Ohio and was still not operable. He went to MSK for a second opinion. The day I had my resection he had his HAI liver pump placed. I remember him walking the hospital floor past my room even though we wouldn't really meet until I saw him at the outpatient facility weeks later. In any case he had about 3 HAI treatments and the last time I saw him at the outpatient facility he was recovering from a liver resection. He was sore but cancer-free. He takes Corporate Angel flights to and from NYC. Check out http://www.corpangelnetwork.org/. It is free and he told me he has flown on Procter & Gamble's private jet to/from NYC. He said one trip a marketing exec was on the flight with him and presented him with a huge basket of P&G products. I imagine there are other organizations that provide similar flight arrangements but I know this one has worked for two people I know.
If you need rides from the Newark or Teterboro or Morristown airports to NYC you can let me know. As long as you don't mind a minivan filled with cheerios and empty juice boxes I can get you there....
Don't let anything stop you Donna from getting what you need. And get on that juicing right away!!!
Amy
Donna, I really don't picture you sitting around doing nothing about this..Naw, just don't see that happening...I think I know ya better than that. Yep, you'll be burning the phone up tomorrow. I think that the both of you are making the right decisions. She isn't a surgeon but a great oncologist which she seems to be never resents their patients getting second opinions. If they did then that would seem to me that they had something to hide, I think she will be more than fine for you to do that. Thats the difference between being a good oncologist and a Great oncologist, and I think if she is thinking of her patients welfare then she will be more than happy to accomodate you with that second opinion.....I think you'll be just fine sweetie......{{{{{{{{{hugs}}}}}}.......Clift0 -
NYC: Flying and Staying
Here are some resources you might find useful:
Free Air Transportation for Cancer Patients
*AirCare Alliance website (list of as many free air transport resources as they can find):
888 260-9707
http://www.aircareall.org
*AirCharity Network (coordinates flights for people in need, some on commercial airlines) http://www.aircharitynetwork.org 877-621-7177
*AngelFlights (volunteer, no fee)
http://www.angelflight.com Phone: 918.749.8992
In addition to Hope Lodge, Miracle House provides housing with kitchen access at very reduced prices. Miracle House website: http://www.miraclehouse.org/ 560 West 43rd St.near 11th Ave.) in the River West apartment building (24-hr. secure bldg.)0 -
Think I would get a secondEebee said:NYC: Flying and Staying
Here are some resources you might find useful:
Free Air Transportation for Cancer Patients
*AirCare Alliance website (list of as many free air transport resources as they can find):
888 260-9707
http://www.aircareall.org
*AirCharity Network (coordinates flights for people in need, some on commercial airlines) http://www.aircharitynetwork.org 877-621-7177
*AngelFlights (volunteer, no fee)
http://www.angelflight.com Phone: 918.749.8992
In addition to Hope Lodge, Miracle House provides housing with kitchen access at very reduced prices. Miracle House website: http://www.miraclehouse.org/ 560 West 43rd St.near 11th Ave.) in the River West apartment building (24-hr. secure bldg.)
Think I would get a second opinion...Take care Hun.0 -
Thank You!mommyof2kds said:Think I would get a second
Think I would get a second opinion...Take care Hun.
Thanks Ebee for that info, I am looking at the sites now, and thanks all for putting in your opinions, I really am thinking hard on this, and hope to get to New York or maybe Vanderbilt? I want a good, reputable liver surgeon, and just don't know the names
Hugsss!
~Donna0
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