daisy
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They are recommending “Fulfori” chemo. We have an appointment at Mass General tomorrow to see what our options are.
So do I start a new thread under sticky or add to where the agio 120 trial has already been introduced? Where do I go specifically to start a new thread
If patients are receiving this an off label use? What is everyone paying for this drug? Do the pharmaceutical companies just gives to the patients or do the patients pay out of pocket? Also how long does one need to stay on this?
If patients are receiving this an off label use? What is everyone paying for this drug? Do the pharmaceutical companies just gives to the patients or do the patients pay out of pocket? Also how long does one need to stay on this?
She doesn’t seem depressed at all, just constantly tired. It frustrates her that every time she goes to a doctor appointment they ask her if she’s depressed and want to put her on antidepressants. I sincerely mean it I do not feel that that is our issue. I think the lack of sleep is a huge causing the fatigue as for the muscle aches that I am unsure of.
Let’s think about this….this hospital and others similar have doctors that claim to have found cutters for cancer but because of the bog pharmaceutical companies not making any money their theories got shut down. Doesn’t sound to far fetched does it? Cancer treatments are a huge money maker. I am not buying into anything no one is more skeptical than me. I have been through 7 hospitals with my mother because I am extremely proactive and never take no for an answer. I ALWAYS want to know why??. I am sure there are many gimmicks taking advantage of desperate people every day. Today we are not desperate but I am sure the day will come. I am going to follow this gentlenman named Ryan D. Luelf on Facebook he just returned from the Chipsa hospital after being diagnosed with stage IV Lymphoma. I am curious how he will do after his month there.
I am reading so much that diet, juicing and supplemnts have helped many….our body is comprised of living cells that feed off of enzymes. The enzymes come from what we eat…I think it makes sense that our diet could help??? Possibly cure I don’t know but not ruling anything out. The one thing I know is the gem/cim is not the holy grail it is the standard of care and the results stink. Thinking out of the box is why my mom is still here I need to learn more about all of the alternative treatments.
What I wondering if anyone knows anyone who went there and experienced first hand good or bad experiences??
Just want to clarify….the chemo killed the nodes. Radiation next week for the tumor. I will keep you all updated.
5 years WOW!! You give all of hope and inspiration!! With out you and Cathy this journey would of been a nightmare. You are a companionate mentor and have helped so many with this cancer. THANK YOU from the bottom of my heart for all that you do for so many!! ,
Hello Michael,
Welcome! We are from CT too. Please get a second opinion about resection! My mom had 5 doctors say no including one at Dana Farber. Dr. Chapman at Barnes Jewish Memorial did what everyone said was not possible. You can send you scans you do not need to go in person. Nothing to loose. He is the expert at this surgery. Any questions please feel free to contact me. 860-836-2600 my name is Rosetta you can read about my moms journey under my user name Daisy
My mother had a resection late July in 2013. The 7cm tumor was removed but 3 nodes were involved. She had 6months of gemniside and was in remission till this past June ….then mom’s cancer re- appeared and 2 nodes were (hot) dr’s terms and a tumor. she just underwent 3 months of gem/cim and the nodes are now clear YEAH:) but the tumor did not shrink at all. She will now have radiation to blast the tumor and then perhaps she will be back in remission (if such a thing exists) but no complaints because she was given 6 months to live almost exactly 2 years ago… And it ain’t even close to over yet!!!! Hope this information helps.
May 24th that’s my wedding anniversary !!! one more thing we have in common!! I now have 2 things to celebrate every year on the 24th….HAPPY ANNIVERSARY my dear sweet friend!!!!
Love you lots!!!
