Carpe Diem Posted May 7, 2011 Share Posted May 7, 2011 My plans for having my radiation therapy (to combat inflammatory breast cancer) in my hometown have been put on hold. The office called today to tell me that the doctor here does not do twice daily radiation and that I would have to go to MD Anderson in TX or some other hospital. I am very upset. I was under the belief that they would do the treatment. They have waited so long to tell me that they won't do it that now I am scrambling. I do now have an appointment to get into MD Anderson on Thursday but it is all so overwhelming. A plane ticket to get there is 1300.00 for one ticket!! I would likely have to leave my family for over a month to go through this treatment. I am so tearful. I don't even know if having twice daily is the right decision. Some women have reported problems while others are doing well. The studies done at MD Anderson are small. My understanding is that some doctors believe it to not be worth the risk, while the onc. I saw who is a world expert feels it would be to my benefit. Please pray for me to discern what to do. I have no time to waste in deciding. If anyone has any opinion on what to do please let me know. Quote Link to comment Share on other sites More sharing options...
NorCalMom Posted May 7, 2011 Share Posted May 7, 2011 I'm not always in this forum, but I just happened on your post. I will be praying for you!. {HUGS} I also hope others with experience will offer sound advice for you. Quote Link to comment Share on other sites More sharing options...
extendedforecast Posted May 7, 2011 Share Posted May 7, 2011 :grouphug: I hope you come to a decision that feels right. Its a shame that they let you know so late that they wouldn't treat you as planned, so that you could make other plans. Keep us updated. I've been praying since you were first diagnosed, and I'm sorry about this setback. :grouphug: Quote Link to comment Share on other sites More sharing options...
SonshineLearner Posted May 7, 2011 Share Posted May 7, 2011 I'm curious if the radiation is lower dose with it being twice daily. I've studied way up (as you know) about chemo, but not particularly about the radiation. We are loving Cancer Treatment Center of America I can't remember where you live. I do know that I would look to European studies over American. It seems like European Studies are just way ahead of us. If you can't find some studies, I would be happy to help search it out... Sorry about this.... really sorry..... Quote Link to comment Share on other sites More sharing options...
Susan C. Posted May 7, 2011 Share Posted May 7, 2011 It will be good to get MD Anderson's opinion to see if it matches your doctor. Bring everything the world expert said, files, everything, to your appointment at Anderson. Hopefully you will have time to gather it before you leave, or arrange to have it sent to be there before you get there. Make Anderson look at it! Please try not to stress.... stress is not good for cancer. Where are you? Are you near a teaching hospital? Mayo? Emory? Duke? Bowman Gray? You may be able to get closer to home. Quote Link to comment Share on other sites More sharing options...
Heather in Neverland Posted May 7, 2011 Share Posted May 7, 2011 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
RoughCollie Posted May 7, 2011 Share Posted May 7, 2011 :grouphug: and prayers. Quote Link to comment Share on other sites More sharing options...
kolamum Posted May 7, 2011 Share Posted May 7, 2011 What about the airline {name evades me} who flies sick people for free?? I read about it, by chance, recently on someone's blog and honestly couldn't tell you which one, but maybe a google search would help? Quote Link to comment Share on other sites More sharing options...
Margo out of lurking Posted May 7, 2011 Share Posted May 7, 2011 :grouphug: Praying, Christine, for discernment, peace, healing. Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted May 7, 2011 Share Posted May 7, 2011 :grouphug: Praying for you Christine. What city is Anderson in? Quote Link to comment Share on other sites More sharing options...
Tammyla Posted May 7, 2011 Share Posted May 7, 2011 :grouphug:Prayers:grouphug: Quote Link to comment Share on other sites More sharing options...
Paintedlady Posted May 7, 2011 Share Posted May 7, 2011 No suggestions, but wanted you to know I'm praying for you and sending you lots of :grouphug::grouphug::grouphug:. Quote Link to comment Share on other sites More sharing options...
Teachin'Mine Posted May 7, 2011 Share Posted May 7, 2011 I'm praying for you as you discern. :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
MamaT Posted May 7, 2011 Share Posted May 7, 2011 :grouphug: Praying for you. Quote Link to comment Share on other sites More sharing options...
texasmama Posted May 7, 2011 Share Posted May 7, 2011 :grouphug: MD Anderson is, as you know, a very well respected place to go if you have cancer. Ask the hospital if there are programs which help patients with travel related to medical expenses. I know that these programs exist for kids. Angel Flights comes to mind. There are others. A cancer patient's main concern should not be how to afford getting to treatment.:grouphug: Call the hospital social worker if needed. I don't know how long is needed to set these things up, but the social worker will. Some airlines offer programs, as well. Again, the social worker should be able to help you with that. Also, there is low cost lodging for patients in many places. What do you have peace about dong? Be still. You will know. I will pray that you will have discernment.:grouphug: Quote Link to comment Share on other sites More sharing options...
texasmama Posted May 7, 2011 Share Posted May 7, 2011 I would also appeal to the referring hospital for help, particularly since their late decision has put you in a lurch. Call social workers at both hospitals. I know people in Houston (not in the medical field but they might be knowledgable) so please pm me if there is something I can do.:grouphug: Quote Link to comment Share on other sites More sharing options...
Heatherwith4 Posted May 7, 2011 Share Posted May 7, 2011 Praying for your discernment and healing and peace. Quote Link to comment Share on other sites More sharing options...
Beth in OH Posted May 7, 2011 Share Posted May 7, 2011 :grouphug:Praying that God will carry you through the emotional weariness of this journey and bring physical healing.:grouphug: Encouragement: Hang in there and make yourself do the practical stuff that seems like too much emotionally--make the phone calls, ask the questions, take a nap. Much love to you, Christine. Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted May 7, 2011 Share Posted May 7, 2011 I can only imagine how discouraging and frustrating this is for you. I'm SO sorry!!! I have no advice but wanted t give you:grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Kalypso Posted May 7, 2011 Share Posted May 7, 2011 Praying for you, Christine.:grouphug: I hope you are quickly able to resolve this "bump" in your treatment. Quote Link to comment Share on other sites More sharing options...
MBM Posted May 7, 2011 Share Posted May 7, 2011 (edited) What about University of Chicago Medical Center? It's not MD Anderson, which I've only heard raves about, but it would be closer for you. Dr. Olufunmilayo Olopade is a MacArthur Fellow and recipient of the genius grant, and I believe she's very knowledgeable about IBC: http://www.uchospitals.edu/physicians/olufunmilayo-olopade.html Dr. Stanley Liauw at U of C might also be worth contacting since he seems to be involved with radiation treatment studies. http://www.radonc.uchicago.edu/typea/fac_sliauw-pubs.html Might you have a treatment facility even closer to you that your doctor is not aware of? I would second contacting Cancer Treatment Center of America to get info. Just throwing that out there to consider. Praying you find a solution that will give you peace of mind very soon, Christine. Keep positive! :grouphug: :grouphug: :grouphug: Edited May 7, 2011 by MBM Quote Link to comment Share on other sites More sharing options...
Carpe Diem Posted May 7, 2011 Author Share Posted May 7, 2011 All of your hugs and prayers and suggestions are so appreciated. I am feeling a little better today but still feeling scared and uncertain. I looked at the Cancer Treatment Centers of America. I was a bit excited about that as I could live with my parents and bring my kids. But I don't believe my insurance covers this facility but I will call to be sure. It sounds like an awesome place where your whole person is treated and supported. The woman I talked to on the phone for MDAnderson made it sound like there weren't any openings in the Hope Lodge and that realistically I would have to stay in a hotel for 80 bucks a day. It would be cheaper to go to Philly where I saw Dr. Cristofinelli. He actually worked at MD Anderson a year ago. He started up the first Inflammatory Breast Cancer clinic in the country there 4 years ago. What I don't know is if their radiation people are as experienced and if it matters compared to Dr. Woodward at MDAnderson. What some woman with IBC have been telling me is that I don't want to go anywhere for radiation that doesn't have the experience for twice a day. It apparently is very involved and not as simple as just doing it twice a day! So, I guess I am glad that my local rad.onc said he wouldn't do it I just wish I would have found out a week ago or more. I also received an email from a woman who had twice daily at MDA and her cancer came back 8 months later anyway. Another woman had her esophagus damaged and she can't swallow now. She was at MDA, too. But for every scary story I can also find someone who is still living after a few years and attributing it to twice daily radiation. Jesus I trust in you. Help me through this. Quote Link to comment Share on other sites More sharing options...
MariannNOVA Posted May 7, 2011 Share Posted May 7, 2011 Praying for you. :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
J-rap Posted May 7, 2011 Share Posted May 7, 2011 (edited) ... Edited September 9, 2023 by J-rap Quote Link to comment Share on other sites More sharing options...
blakereese Posted May 7, 2011 Share Posted May 7, 2011 :grouphug::grouphug: I'm so sorry that things are not going to be as easy for you. I hope you can find peace in whatever decision you make. :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Mommyfaithe Posted May 7, 2011 Share Posted May 7, 2011 No advice Christine but I'm still praying for you. You come to my mind often. :grouphug: Me too. I think and pray for you daily. I wish I had words of wisdom, but I don't. HE does though and I know He will guide you to the right decision and open the doors for it all to happen. Faithe Quote Link to comment Share on other sites More sharing options...
DaffodilDreams Posted May 7, 2011 Share Posted May 7, 2011 If I lived in Houston, I would let you stay with me. I'm so sorry, Carpe. I have had many family members use MD Anderson, though, and they all felt very well taken care of. Yes, all of them stayed in hotels near the hospital. Have you thought about calling the airlines and asking if they have a medical emergency fare? It seems like NW had some sort of angel fare several years ago. It may have just been for kids, though. My brain is fuzzy on the details. More than likely, you'd have to call and speak to a real, live person to inquire about special case fares. Another thought is to see if any friends or family have mileage points they can donate and transfer to you. I'll keep you in my thoughts. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted May 7, 2011 Share Posted May 7, 2011 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
SonshineLearner Posted May 7, 2011 Share Posted May 7, 2011 Hi.... Be sure to have the Cancer Center... place call your insurance, too. They've been super helpful calling my mom's insurance and having things approved... So... perhaps... Breast Cancer is one of the cancers that you have an incredible chance of recovering from.... I believe that you will be here many happy years!! Quote Link to comment Share on other sites More sharing options...
MBM Posted May 7, 2011 Share Posted May 7, 2011 If you use MD Anderson, could you rent a home for awhile? That might be even comfier than a hotel. Maybe use VRBO? MD Anderson also has oncologists who use integrative treatments (holistic stuff). Some of them are very good. I hope this helps and you are feeling better. Quote Link to comment Share on other sites More sharing options...
TheCoffeeChick Posted May 7, 2011 Share Posted May 7, 2011 :grouphug: praying Quote Link to comment Share on other sites More sharing options...
texasmama Posted May 7, 2011 Share Posted May 7, 2011 If MD Anderson is your first choice because of the quality of the medical treatment, please pm me. I know a lot of people in that area whose hearts would be touched by your situation, and it may very well be possible for you to find a family to stay with, if you would be comfortable with that. (My best friend since college and her entire family live in the Houston area.) I know financial considerations must be made, but if lodging is the "make it or break it" issue, I will try to help hook you up. No promises, but it would be my pleasure to try. Quote Link to comment Share on other sites More sharing options...
Rosie_0801 Posted May 7, 2011 Share Posted May 7, 2011 :grouphug::grouphug::grouphug: Rosie Quote Link to comment Share on other sites More sharing options...
Tutor Posted May 7, 2011 Share Posted May 7, 2011 :grouphug: We are praying for you. :grouphug: Quote Link to comment Share on other sites More sharing options...
Barb_ Posted May 7, 2011 Share Posted May 7, 2011 Christine, here is a list of humanitarian organizations who help with free or reduced cost airline travel for critically ill patients. It's a pediatrics website, but you should be able to find a lot of good information regardless: http://www.ped-onc.org/resources/airlineflights.html If all else fails, call the airlines that service your area and explain your predicament. It may help. :grouphug: Barb Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted May 7, 2011 Share Posted May 7, 2011 Google "compassion flights" - many airlines offer them for illness as well as for other reasons. Quote Link to comment Share on other sites More sharing options...
NoPlaceLikeHome Posted May 7, 2011 Share Posted May 7, 2011 :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Jennifer in MI Posted May 7, 2011 Share Posted May 7, 2011 I'll keep praying for you!!! Quote Link to comment Share on other sites More sharing options...
Carpe Diem Posted May 9, 2011 Author Share Posted May 9, 2011 Just wanted to say that I have been spending most of the day on the computer researching. I have a lot of phone calls in my future tomorrow. I will be calling the angelflight people. Texasmama we are leaning on coming to MD Anderson. I am grateful for your offer. I will pm you. My main concern is should I really do the twice a day or will I fine receiving the once a day at home. I am praying for the answer to appear to me. Thank you. :grouphug: Quote Link to comment Share on other sites More sharing options...
Brilliant Posted May 9, 2011 Share Posted May 9, 2011 I recently did the 2x/day radiation. I researched it and believed it was the best option for me, but I had a hard time finding a hospital to do it for me here in SoCal. I considered MD Anderson, too (we have family in Houston) but actually ended up with a plane ticket to Denver to be treated at the Rocky Mountain Cancer Center. Then, at the last minute a hospital here agreed to give me the treatment. It was literally the last minute - my flight was in the afternoon, and we found out that morning! I wondered if people thought I was crazy to want to travel so far for treatment. So even though it worked out for me to stay home, I want to encourage you to pursue whatever treatment you think is best. Quote Link to comment Share on other sites More sharing options...
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