kim81sky Posted July 2, 2009 Share Posted July 2, 2009 Hi everyone- Sorry I haven't posted in a while. Mom had 6 weeks of radiation on her left lung, and during that time, I gave myself permission to take some time off of looking at things about lung cancer. We got the results of her latest scan today....the good news is that it isn't as bad as I thought it would be. She was in a lot of pain last Wednesday/Thursday that led me to think that while on radiation, the cancer had spread to her liver big time. Unfortunately I was right, it has, but not nearly as bad as I thought it was going to be. The cancer has multiplied in her right lung, and now there is fluid on the right lung, but everything in the left lung is smaller, and there is no fluid there. The site in the liver is only 1.3cm. Everything else is stable. We are leaving for Germany on Friday, and I am scared out of my mind. She is putting off any systemic treatment until the mid of August when she comes back, and has refused to see any doctors that I contacted in Germany. Her dr. did tell her that he did expect her cancer to be worse when she comes back, but she is willing to take that risk. I am going for the first week, to make sure that she will get there ok. Has anyone taken a long flight with cancer, and was there any problems? I hate to ask, but I am afraid that there will be complications b/c of the flight. We do also know what the treatment will be when she comes back....She will be starting a research study with new meds. from Amgen. They are called AMG655 and AMG479. One causes cell apoptosis(cell suicide) and one is an insulin sight inhibitor. Anyone heard of these? I want to send a shout out to all who have been dealing with this horrific disease........I have watched my mother's courage, and have read so many posts....you guys(and gals!) are amazing! Patti B- you remind me of my mom! Love and hugs to all! Kim Quote Link to comment Share on other sites More sharing options...
Patti B Posted July 2, 2009 Share Posted July 2, 2009 Hi Kim- I take that as one of the best compliments ever paid to me!!! Your mom sounds awesome and I am glad that she is willing to travel. Gotta live life!!! Hopefully just being away from the constant chemo and radiation and doc appointments will make her feel better. Sorry her scans weren't the best, and no, I have never heard of that trial. Sure hope its the magic bullet for her!! Do you have the name of a doc there just in case she needs one???? She may say now she not going to one but you never know if she starts to feel badly. My family and I went on a trip right after I was diagnosed and the onc felt it was fine to go. His only restriction on me was not to take a cruise because if I got sick, who knows where I would land up at. We flew to Arizona and I had no problems whatsoever. I hope you and her have a wonderful trip filled with many memories. Please let us know how things went. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
RandyW Posted July 2, 2009 Share Posted July 2, 2009 Here is your trial Link !!! http://clinicaltrials.gov/ct2/show/NCT0 ... 655&rank=3 Have not heard of major problems flying but if MOm has had Chemo may want to get a letter from Oncologist. I knew guy flew to Oklahoma and had so much chemo he said he could possibly trigger chemical alarms at airport. MEt him in our Oncologists office so legit patient. Had to get letter for security reasons he told me. Fluid around lungs and or Heart can be very scary if problem continues with out treatment. Mom will feel like she is having a heart attack. Only solution is to drain Fluid.. Icu for couple of days possibly so make sure of Health insurance Emergencies!!! Quote Link to comment Share on other sites More sharing options...
kim81sky Posted July 2, 2009 Author Share Posted July 2, 2009 Patti B.- Thanks for the best wishes! I do have names, numbers, fax numbers, and assistants' names of doctors in Germany! One of them even happens to be the female doctor that Farrah Fawcett went to. Her name is Dr. Ursula Jacobs, and I actually have exchanged some e-mails with her. I wanted my mom to meet with her for a consultation, but my mom said no. Maybe she will change her mind- I hope! I will let you know how the trip goes, and once she starts treatment, I will keep you posted. We are excited about these meds. Kim Quote Link to comment Share on other sites More sharing options...
jaminkw Posted July 2, 2009 Share Posted July 2, 2009 Kim, good luck to your mom. Hope she has a great trip. It's nice to see her taking charge and doing what she wants to do with the life she has. Judy in Key West Quote Link to comment Share on other sites More sharing options...
cat127 Posted July 2, 2009 Share Posted July 2, 2009 My sisters and I flew to Paris in October, while Kelly was on a little Tarceva drug holiday. I was a little pestering to her about moving around, and I think she wanted to shove a pillow in my mouth a time or two , but other than that, no problems. I made her move around a bit due to the increased risk of DVTs with flying and increased risk of them with cancer. So walking around, moving the legs to pump the blood back up, that is a good way to try and decrease those risks. One of the very first posts I ever read over at cancergrace.org was someone asking Dr West if Stage 4 lung cancer patients could fly. His response was something like, with the help of a plane they can. And I knew I would enjoy his input since he wasn't about to lose his sense of humor. I told my sister about it and she told me that knowing if she could fly overseas was very important to her. She was thrilled to know that she still could. In fact, she's already booked her next trip to Paris for this fall. Good luck to you and your mother!! Quote Link to comment Share on other sites More sharing options...
Carleen Posted July 2, 2009 Share Posted July 2, 2009 I'm glad your mom is feeling up for a trip. I hope she has a wonderful time, and enjoys every moment. I've flown with my husband a number of times during his cancer journey, and a couple of them were long flights (12+ hours). There were no problems, however we did take a few precautions. One of the trips was right after an round of chemo, so before going we had bloodwork checked to make sure his white blood cells were not completely crashed. And keeping in mind lower white blood cells, we flew prepared for infection. We carried with us a mask that he could wear if we were seated near anyone who appeared to be coughing or sneezing etc. Most flights we didn't need it, but it always felt better to be prepared and have one with us. We also talked to the flight attendents at check in and let them know that he had an increased risk of infection, so they were prepared to move our seating if we were seated near someone who was sick, or near small children who often carry viruses and germs they pick up in school/daycare even when they don't display any symptoms. Finally, as Cat127 mentioned, keep in mind that on long flights it is important to get up and move around. It's important for anyone, as blood clots are an increased risk with long periods of sitting, but for cancer patients it's a slightly higher risk so every couple of hours get up and walk to the bathroom or just walk the aisle. It's also a good idea to bring along a small flight pillow. I travel to Europe 5-6 times a year for work, and I get very cramped and uncomfortable, so I take a U shaped pillow on all flights that I can use for different positions. I can rest my head, put it under my feet to elevate them, I put it behind my back for added lumbar support. Knowing that she is probably not in the best physical comfort to begin with, maybe a travel pillow will help ease some tension. I wish you safe travels, and a joyous and memorable trip. God Bless you! Quote Link to comment Share on other sites More sharing options...
SandraL Posted July 2, 2009 Share Posted July 2, 2009 Hi Kim. I am sorry the news about your mom wasn't better. But please remember that the effects of radiation will go on for up to a month after treatment so her condition could actually improve. So don't dwell too much on the doctor saying she will worsen. Good for her for wanting to go on that trip. It will do her good. I don't know about the trials that you mentioned but am sending my prayers that one of them suits and works for her. Take care Sandra Quote Link to comment Share on other sites More sharing options...
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