Liver & Lung Mets..... Going to MD Anderson in Texas
Anyway, with help from you all, I started checking out top notch treatment centers. I live in Southern Illinois but was considering Vanderbilt but my insurance won't cover them. I couldn't decide between Kettering or MD Anderson. My insurance covers both. After some more research I finally decided on Anderson. They are both top notch so I don't think it's gonna make a big difference. Location... that's it.
I am not going there for just a second opinion. I will be staying there according to what my treatment plan calls for. I will be looking for inexpensive lodging if anyone knows of any??? Airfare is gonna kick my butt. Especially since I will have to have someone with me at all times and paying their airfare as well. I am just fortunate I have a few people who can be with me. I don't want to be all alone ... in a strange city.... going thru this unknown treatment.
It may sound silly to go to this extent for treatment but this is my life. I want the best. I am not going to waste time with doctors playing the wait and see game. TIME has become very important to me. Between you guys and the new idea of going to this facility I am feeling real good. I am hoping that God and this center will give me the miracle I need.
Do any of you that go to MD Anderson have any suggestions for me? Anyone know if any airlines give discounts to those with our medical condition? As always, I appreciate your input
Jennie
Comments
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Jennie........
I do know that MD Anderson is the #1 hospital in the nation....and Vanderbilt is 14th.. I think you have made the best move of your life and I am so happy for you...I live in Western Ky and its a 15 hour drive to MD Anderson from here. I had a buddy that made the drive every other week while he was in treatment...Remember, it will be a treat considering what you have been around concerning Dr care. These people will amaze you how well you are treated and cared for and just the simple niceties that seem to surround them...Good luck to you and certainly keep us up to date with everything as you move along your journey.0 -
MD Anderson
Jennie,
Congratulations on making this decision. I know it was tough and you didn't make it lightly. It is difficult to make these huge decisions in the middle of the he!!fire of such awful news. You are so right - this is your LIFE. You do what you need to do.
MD Anderson has a stellar reputation. Remember, some docs are more conservative than others. If you don't get the answers you need, get another opinion, and a 4th, 5th, whatever it takes. YOU do what you need to, it isn't silly AT ALL.
I hope you find inexpensive housing. Have you asked at MD Anderson? I know they have many people travel there everyday and they may have some good resources for you.
Best Wishes,
Kimby0 -
Appointmentkimby said:MD Anderson
Jennie,
Congratulations on making this decision. I know it was tough and you didn't make it lightly. It is difficult to make these huge decisions in the middle of the he!!fire of such awful news. You are so right - this is your LIFE. You do what you need to do.
MD Anderson has a stellar reputation. Remember, some docs are more conservative than others. If you don't get the answers you need, get another opinion, and a 4th, 5th, whatever it takes. YOU do what you need to, it isn't silly AT ALL.
I hope you find inexpensive housing. Have you asked at MD Anderson? I know they have many people travel there everyday and they may have some good resources for you.
Best Wishes,
Kimby
Kimby...
Anderson is contacting me today to set up first appointment. I am still going to keep my first appointment with onc. doc. here but want to get to Anderson like the next day. My surgeon said they won't start any treatment anyway until I am completly healed from surgery so I have a small time frame to get organized. When I talk to Anderson I will indeed inquire about housing.
Have a Good Day
Jennie0 -
Tip for Anderson resourcesidlehunters said:Appointment
Kimby...
Anderson is contacting me today to set up first appointment. I am still going to keep my first appointment with onc. doc. here but want to get to Anderson like the next day. My surgeon said they won't start any treatment anyway until I am completly healed from surgery so I have a small time frame to get organized. When I talk to Anderson I will indeed inquire about housing.
Have a Good Day
Jennie
Idolhunters - I am going through colon cancer treatments right now but years ago I had metastatic testicular cancer which I beat.(2 cancers in a life time - some of us are just lucky) Anyway when I had testicular cancer I went to md anderson and I know that they have all kinds of airfare discounts and lodging discounts for cancer patients through their social services department because I took full advantage of all of them. So, my suggestion would be to contact the social services department at md anderson. Also, I dont know if you plan to work but I filed for disability and used medicaire insurance when I was there and somehow when it was over ended up not owing a red cent. This was all orchestrated by my mother who took care of all the details. Later when you get better you can revoke your disability status and start working again. That is what I did.
P.s.
You are in good hands at M.D. Anderson.0 -
Ericeric38 said:Tip for Anderson resources
Idolhunters - I am going through colon cancer treatments right now but years ago I had metastatic testicular cancer which I beat.(2 cancers in a life time - some of us are just lucky) Anyway when I had testicular cancer I went to md anderson and I know that they have all kinds of airfare discounts and lodging discounts for cancer patients through their social services department because I took full advantage of all of them. So, my suggestion would be to contact the social services department at md anderson. Also, I dont know if you plan to work but I filed for disability and used medicaire insurance when I was there and somehow when it was over ended up not owing a red cent. This was all orchestrated by my mother who took care of all the details. Later when you get better you can revoke your disability status and start working again. That is what I did.
P.s.
You are in good hands at M.D. Anderson.
Thank you very much for the info. I am so glad to hear such good comments about MD Anderson.
I have not applied for disability yet but I do plan on it... and soon...before all the chemo starts.
Take Care
Jennie0 -
Fantastic News
Jennie I am so happy that you have made your decision...now you can move forward to getting well again. I agree about there being help with flights and lodging. Contact the social worker at MD Anderson...also when calling about flights ask them about medical discounts. I know there is a Hope Lodge there in Houston...ask MD Anderson about a referral to the Lodge. You and a companion can stay there as long as the doctor ask for. You would only be out expense for food. Also a lot of different groups take turn bringing in night meals a couple times a week so that helps out also. Good luck...let me know if I can help. I think you made the right decision ...you have to go where the insurance will pay and MD Anderson is #1 the BEST. You will be amazed at the difference in your care and how helpful everyone is.
I will keep checking on you...also go to www.caringbridge.org and set you up a website you that you can keep you family and friends updated daily without calling and they can leave you message ...all for free. It has been a great resource for us and most hotels, hospitals, and Hope Lodges have computers free to use. I hope to hear from you soon. You are in my prayers...the fight may be long and hard but you can make it.
Hugs,
Anna0 -
Good Call!
Jennie, that's an excellent call! I personally did not have to go to MD Anderson, but in your situation you are being your own best advocate. Yes, it's your life, and the decision you have made means you want it! I'm keeping you in my prayers.
Hugs,
Kirsten0 -
Jennie - I will keep you inamcp said:Fantastic News
Jennie I am so happy that you have made your decision...now you can move forward to getting well again. I agree about there being help with flights and lodging. Contact the social worker at MD Anderson...also when calling about flights ask them about medical discounts. I know there is a Hope Lodge there in Houston...ask MD Anderson about a referral to the Lodge. You and a companion can stay there as long as the doctor ask for. You would only be out expense for food. Also a lot of different groups take turn bringing in night meals a couple times a week so that helps out also. Good luck...let me know if I can help. I think you made the right decision ...you have to go where the insurance will pay and MD Anderson is #1 the BEST. You will be amazed at the difference in your care and how helpful everyone is.
I will keep checking on you...also go to www.caringbridge.org and set you up a website you that you can keep you family and friends updated daily without calling and they can leave you message ...all for free. It has been a great resource for us and most hotels, hospitals, and Hope Lodges have computers free to use. I hope to hear from you soon. You are in my prayers...the fight may be long and hard but you can make it.
Hugs,
Anna
Jennie - I will keep you in my prayers as well. As we newbies are learning there is new advancements in colon cancer all the time and md anderson is on the cutting edge of all of it. If you haven`t already check out the story of Anna`s(amcp)husband. Only God knows our time but by medical standards he should have been dead a long time ago and he is still alive and kicking with a chance for cure.0 -
Cancer is a stressful and
Cancer is a stressful and serious thing but it helps me sometimes to make a joke out of it in order to keep a positive attitude. I named my original tumor Buttercup and enacted a mission called operation kill Buttercup. Surgery ridded me of Buttercup but her offspring are still lingering so now it`s operation Kill Buttercups Offspring. Also if you go to cancergame.org ther is a site where you can download a free game. Your character is a t - cell that zaps cancer cells. Its very therapeutic and helps to visualize your cancer being destroyed0 -
Naming tumorseric38 said:Cancer is a stressful and
Cancer is a stressful and serious thing but it helps me sometimes to make a joke out of it in order to keep a positive attitude. I named my original tumor Buttercup and enacted a mission called operation kill Buttercup. Surgery ridded me of Buttercup but her offspring are still lingering so now it`s operation Kill Buttercups Offspring. Also if you go to cancergame.org ther is a site where you can download a free game. Your character is a t - cell that zaps cancer cells. Its very therapeutic and helps to visualize your cancer being destroyed
Eric,
I named my tumor Fred. I have someone in my life with that name who is very negative and not nice at all, so it just seemed fitting to name a rectal tumor after him! Then a friend who works on the railroad told me FRED means F^%&(*g Rear End Device in their lingo...and it was doubly fitting! And yes, chemo/radiation pre-surgery killed Fred....
Vicki0 -
MD AndersonVickiCO said:Naming tumors
Eric,
I named my tumor Fred. I have someone in my life with that name who is very negative and not nice at all, so it just seemed fitting to name a rectal tumor after him! Then a friend who works on the railroad told me FRED means F^%&(*g Rear End Device in their lingo...and it was doubly fitting! And yes, chemo/radiation pre-surgery killed Fred....
Vicki
I went to MD Anderson in Houston for my liver resection and my Dr was Steven Curley. LOVE HIM!!! He is personable too. Also, we were there for 17 days and stayed at Candle Suites and they were awesome too. Actually everyone we met and associated with there was great. Good choice and good luck.
Also check into Angel Flights for airlines. There are individuals and corporations that fly people to and from their cancer treatments for free. We didn't do that when I went but when I go back in September for my scan we will look into that.0 -
Peace of Mind @ MDAnderson but nothing new except high expenses
Idlehunter:
I too went to MDAnderson for a second opinion and I'm glad I did, however, the treatment plan they offered me was exactly the same as I was offered in my hometown but...significantly more expensive. I had a CTScan there and had to go to the MDAnderson pharmacy for the barium and I was charged $125.00 for barium!!!! Their CTScan was 4 times more than I pay at home and I live in a resort town where everything is expensive. Like I said, for peace of mind I went but chose not to have treatment there since it was identical to what I was offered at home. I have a 4000. out-of-pocket and Anderson wiped that out quickly. I lived in Houston for 7 years and I knew the MDA reputation. You'll want to rent a car because there's not much around the medical center and hopefully you'll be up to exploring the city; it's great!0 -
Imlieness & Wenchie....Wenchie said:Peace of Mind @ MDAnderson but nothing new except high expenses
Idlehunter:
I too went to MDAnderson for a second opinion and I'm glad I did, however, the treatment plan they offered me was exactly the same as I was offered in my hometown but...significantly more expensive. I had a CTScan there and had to go to the MDAnderson pharmacy for the barium and I was charged $125.00 for barium!!!! Their CTScan was 4 times more than I pay at home and I live in a resort town where everything is expensive. Like I said, for peace of mind I went but chose not to have treatment there since it was identical to what I was offered at home. I have a 4000. out-of-pocket and Anderson wiped that out quickly. I lived in Houston for 7 years and I knew the MDA reputation. You'll want to rent a car because there's not much around the medical center and hopefully you'll be up to exploring the city; it's great!
Imlieness & Wenchie.... thank you both for responding. My appointment is June 10th and I am so looking forward to going. I cannot believe you mentioned Candle suites...... I have been checking that place out online.
Jennie0 -
liver and lung metsidlehunters said:Imlieness & Wenchie....
Imlieness & Wenchie.... thank you both for responding. My appointment is June 10th and I am so looking forward to going. I cannot believe you mentioned Candle suites...... I have been checking that place out online.
Jennie
Bravo in getting to a world class cancer center. Be sure to get several complete copies of all your medical records, everything including the CD's of your scans not just the reports. Make at least four copies of the everything. Hand carry them with you everytime you go to an appointment. Give one to your new doctor, keep one yourself and have extras. When we go from one program to another it is frustrating to know that our medical records don't always travel nicely, but get lost or abbreviated. You will have to have records sent from your doc before your appointment also but my experience is that nothing gets to where it should go in time so SEND a copy yourself in addition to taking a copy for them also.
Lodging is a tax deduction as well as travel and meal expenses....keep a log on this. Last year I wrote off over $15,000 worth of travel, meals etc on my federal taxes so at least that helps. You can even write off the expenses of your companion if you put her on your payroll as a medical transportation assistant. I had a friend drive me 200mi round trip to my chemos and wrote off her fees for that.
Best prayers You are in excellent hands
Serrana0 -
serrana.............. whatserrana said:liver and lung mets
Bravo in getting to a world class cancer center. Be sure to get several complete copies of all your medical records, everything including the CD's of your scans not just the reports. Make at least four copies of the everything. Hand carry them with you everytime you go to an appointment. Give one to your new doctor, keep one yourself and have extras. When we go from one program to another it is frustrating to know that our medical records don't always travel nicely, but get lost or abbreviated. You will have to have records sent from your doc before your appointment also but my experience is that nothing gets to where it should go in time so SEND a copy yourself in addition to taking a copy for them also.
Lodging is a tax deduction as well as travel and meal expenses....keep a log on this. Last year I wrote off over $15,000 worth of travel, meals etc on my federal taxes so at least that helps. You can even write off the expenses of your companion if you put her on your payroll as a medical transportation assistant. I had a friend drive me 200mi round trip to my chemos and wrote off her fees for that.
Best prayers You are in excellent hands
Serrana
serrana.............. what a wonderful suggestion on several copies of my reports. I have already sent my CD and original reports to M.D. Anderson. I had thought about the medical expenses as a tax deduction so I called my accountant earlier today and he had informed me of that but thanks for the heads up on that. Everyone has been so helpful in the preparation of my trip. I will keep you all informed as I will be taking my laptop with me.... more later
Jennie0 -
Go in peace knowing you areidlehunters said:serrana.............. what
serrana.............. what a wonderful suggestion on several copies of my reports. I have already sent my CD and original reports to M.D. Anderson. I had thought about the medical expenses as a tax deduction so I called my accountant earlier today and he had informed me of that but thanks for the heads up on that. Everyone has been so helpful in the preparation of my trip. I will keep you all informed as I will be taking my laptop with me.... more later
Jennie
Go in peace knowing you are doing everything you can do.
Take care of your comfort needs too....take your favorite blankie, some lavender, chocolate or whatever makes you feel normal, well and blessed
Serrana0 -
Appointmentidlehunters said:Appointment
Kimby...
Anderson is contacting me today to set up first appointment. I am still going to keep my first appointment with onc. doc. here but want to get to Anderson like the next day. My surgeon said they won't start any treatment anyway until I am completly healed from surgery so I have a small time frame to get organized. When I talk to Anderson I will indeed inquire about housing.
Have a Good Day
Jennie
Jennie
So glad your appt at MD Anderson is next week. We will keep you in our thoughts and in our prayers and look foward to hearing news of your visit. Hope everything goes great..keep a positive attitude. There is always HOPE!! Glad to also hear that you are checking on lodging ...did you check out HOPE LODGE which is connected with the American Cancer Society. There is no charge at the LODGE. We are headed back to Nashville on Monday for Frank's recheck from his liver resection and to meet with Medical Oncologist. Frank is still having a lot of pain so I will be glad to see the doctors again. Remember each step is a closer step to defeating the monster. Blessings always.
Hugs
Anna0 -
liver and lung mets
I'm sorry it took so long to get back to you. I have had 3 lung operations. They did wedge resections 2 times. With those I asked for the "muscle sparing technique" which is a little more complicated for them to do I think but it saves them from going in through you back and cutting more muscle, probably laterals but I am not positive. The recover time is easier. Last summer they took out the lower section of my right lung, not an entire lobe but part of it. The operations were not as bad IMO compared to a colon, liver, pump installation etc. It's not like a RFA either (radio frequency ablation). Depending on how much they do you will most likely wake up with a drain in your lung, it's standard procedure until the lungs are healing OK.
Sounds like you got great advice and are going to a great place.
Good luck with it all.
-phil0 -
Phil.... Dual MetsPhillieG said:liver and lung mets
I'm sorry it took so long to get back to you. I have had 3 lung operations. They did wedge resections 2 times. With those I asked for the "muscle sparing technique" which is a little more complicated for them to do I think but it saves them from going in through you back and cutting more muscle, probably laterals but I am not positive. The recover time is easier. Last summer they took out the lower section of my right lung, not an entire lobe but part of it. The operations were not as bad IMO compared to a colon, liver, pump installation etc. It's not like a RFA either (radio frequency ablation). Depending on how much they do you will most likely wake up with a drain in your lung, it's standard procedure until the lungs are healing OK.
Sounds like you got great advice and are going to a great place.
Good luck with it all.
-phil
Sounds like we both are dealing with dual mets. What size/location were the mets in lungs. My onc. here seems to think that they will want to do immediate surgery on me before any chemo is started. I have not had any chemo as of yet for anything since this all started. I am almost 7 weeks out of surgery and my naval area is very sensitive. When I cough it burns REALLY bad... makes menwant to say bad words...and sometimes i do. RFA has been mentioned for my liver if indeed they do find something there. Also... where did they cut you at for lung surgery?
Jennie0 -
Let the explitives fly...idlehunters said:Phil.... Dual Mets
Sounds like we both are dealing with dual mets. What size/location were the mets in lungs. My onc. here seems to think that they will want to do immediate surgery on me before any chemo is started. I have not had any chemo as of yet for anything since this all started. I am almost 7 weeks out of surgery and my naval area is very sensitive. When I cough it burns REALLY bad... makes menwant to say bad words...and sometimes i do. RFA has been mentioned for my liver if indeed they do find something there. Also... where did they cut you at for lung surgery?
Jennie
then blame it on Tourette's. Well, I tend to sort of separate myself from things a bit so I do not recall the exact sizes of the nodes as we called them. My brother has been the one who goes with me and is more of the detail guy. From what I can recall, the mets were not huge by any means, maybe pea sized or a little bigger. For the first 2 operations they were located close to the outer part of my lung so the were able to just take wedges out. For my 3rd (and final - too much scar tissue now) operation, they removed the lower part of my right lower lobe. There are 3 lobes on the right, 2 on the left I believe. They did chemo first for me to try to shrink them, that has been how all of my tumors have been approached. Chemo to shrink them, then operate. I did have a RFA done on my right lung once, what a walk in the park. In one day, out the next, all I had to show for it was a needle mark. It was great.
For the lung surgeries, when they used the muscle sparring technique they cut me a few inches under my armpit and went down along ribs for about 6 inches or so. With the regular lung surgery, they went through my upper back and sliced down toward my side, maybe 10 inches or so.
I hope this helps, I do have a photo if you're into seeing it.
I thought I better not just post it.
-phil0
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