jean
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Lissa
I was just reading an article about the use of Gemzar alone in resected pancreatic cancer with a 5 year follow up. It showed that 21% of patients given 6 months of Gemzar were still alive as compared to 9% who had observation only. This was a phase III International trial out of Germany and involved 368 patients. Gemzar increased disease free as well as overall survival.
I know it’s not cholangiocarcinoma but there are similarities between the two types of cancer. Just thought it was interesting and wanted to pass it along.
So glad to hear how well you’re doing!
Jean
Such great news Kris…wonderful!!!! Have a special trip home. What an amazing surprise for your mom’s birthday!
Jean
Such good news Lainy! Hope those shots work quickly for Teddy and wishing the best on his upcoming procedure. OK…just stop worrying…right!!!
Jean
Lainy
Because the side effects of radiation are specific to the area being treated, one would only have side effects in that exact area. The skin side effects of radiation can certainly include itching, but only within the exact area treated. You also can get skin reactions both front and back as the radiation would be coming from both sides, or in IMRT, from a number of different angles. Would the area on his spine correspond with the area that was being treated? Radiation does not cause any generalized skin reaction such as itching. Skin reaction can get worse for up to a week after treatment is completed and do take several weeks to completely resolve. Is he on any new medications e.g. antibiotics? Just a few thoughts…you might check back with the Rad Onc. Hope the lab work comes out fine.Great job with the letters Lainy…let’s hope they make an impact!
Thinking of you both!
Jean
Rank
I have been thinking so often of you and your family since you posted yesterday. It must just be heartbreaking to see him like that. And just when you want so much to spend loving and meaningful time with him in his last days. I once read a study about what symptoms patients have that families find the most difficult to deal with, and it is confusion and agitation. Just when you so much want to talk with him and to let him know how much you love him…and he is only agitated and angry. He is not himself…he is not the dad that you know and love. But he still is…we cannot know what he is really understanding and he may well still understand that those around him love and care for him. I think, despite everything, all you can really do is be with him and your mom, and after he is gone you will know that you did do all you could. I so hope that they can find a medication that can help him to feel at peace. I have no answers…I just hope you can all find peace in his last days.Know that my thoughts are with you and your family. I think you have all been so strong during this difficult situation.
Jean
Lisa
What a great letter! You spoke well for all of us…thanks for doing it. I think I see another possible letter writing campaign coming!!!Jean
Lainy
Such good news for you and Teddy. I’m glad everything is finally moving forward! Another good news day!!!Jean
Jeff
I’m very glad to hear you’re getting relief for the swallowing issue. As far as the tumor compressing the spinal roots, have you asked about Cyberknife? It’s my understanding that one of it’s uses is in recurrences in previously treated areas. It might be worth discussing with your radiation oncologist. Is there a Cyberknife center in your area?You have probably already tried Oxycontin, but would be an alternative if you have too many side effects from the Morphine…thought I’d suggest anyway! And the Fentanyl patch does maintain a steady drug level…always important in trying to control pain, and again may work better for you if there are too many side effects from the Morphine.
Just a few late night thoughts! I appreciate your positive spirit so much…and your humor! Keeping you in my thoughts and wishing the best.
Jean
Hello All!
I wanted to let everyone know right away that I did have a PET/CT yesterday and got a call from my surgeon today….and it’s all good news!!!!! Post surgical changes only! Won’t go into all the details, but such an utter relief. I feel as if my life has been given back to me…again…I feel SO grateful. And it feels like a day that needs some good news for us all.Thanks Kris for your story that really was my anchor and gave me hope during this time. And thank you all for your support and kindness. This truly is an amazing group of people!
Jean
Lisa
I think it’s VERY understandable that you are so fatigued. Sepsis is a serious infection with bacteria present throughout the blood system. Just think of what it must take for the body to fight the infection…all of the energy that it must use to overcome it. I know that even a bad cold can cause fatigue that can last for a few weeks. I would certainly expect recovery from such a serious illness, like sepsis, to take a substantial amount of time. The antibiotic that you were sent home with could also certainly cause a lack of appetite and indigestion…very common side effects.Though I know ANY symptoms make any of us worry, it seems to me that these could certainly be caused by your recent illness and treatment. Give yourself a little more time to really recover and then see how you’re feeling. Be sure you’re getting enough rest and eating well…not always easy with a job and kids!!
Hoping you’re feeling much better soon!
Jean
Lainy
How absolutely frustrating! It does make sense to wait about 2 months between the IMRT and the Cyberknife. The effects of the radiation continue after completing the course and gives the surrounding tissues time to heal and the tumor time for maximum shrinkage. Then the Cyberknife can be given to the smallest area possible minimizing treatment to the surrounding areas. That being said, 3 months seems like a long time. And one would think maximum shrinkage would take place within the first month, so waiting 2 months to do the PET/CT after the IMRT, wouldn’t seem to give any increased benefit. Then getting the results and then the extended time to do the Cyberknife planning would probably put it early December. I would really push for moving the PET/CT up to the first of the month. Maybe ask what the benefit would be in waiting essentially 2 months rather than one, from the IMRT completion. Maybe it’s a matter of the Cyberknife being over booked as Jeff suggested. There is a center here in Seattle! Just my thoughts…so frustrating to have to use your energy to push for this when you’re going through everything that you are.Know my thoughts are with you and Teddy.
Jean
Kris
That must have been a VERY difficult time with no answers for so long. I can’t imagine how frightened you must have been.Just to read your story has helped me a GREAT deal…it does let me put this in perspective, to realize that it can just be nothing. There is a reason to hope, as you said.
Thanks so much for taking the time to tell your story. This is a group of many really amazing people. I am so grateful that I found it. I know that I’m sending all of my positive thoughts to you for your continuing good news!
Jean
