jeffg
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RANK
Thank You so much for your post. It confirms my suspicions of another chemo drug, or at least in my own personal feelings, that I had, of it making matters worse for my liver. I just saw my Oncologist on Thursday and he asked if I was going to try anymore chemo after radiation? I said I might. He suggested Tarceva. I said I’m not taking that one. He asked why? I told him it has not been getting very good reviews in my opinion. So he suggested carboplatin again, as I wasn’t on it that long back in 05. Thanks again for being so alert and posting this safety notice.God Bless,
Jeff G.Very interesting Kris. I wonder if they have tried any lab testing on other types of cancers like cc? It surely would be nice to know and then maybe a push to get it approved for compassionate use, while awaiting FDA final approvals. Just thinking out loud again. Great infor site Kris.
JeffHi Alice, My sincere sympathy of John’s passing. His promise was one of great love and confidence.
God’s Strenght,
JeffHi Gavin , Thanks for the update. I’m sorry your Dad was not ready to venture out. Gavin, I really don’t understand about the shaking bouts. It could be lack of sleeping like you said. It could also be a side effect of the photofrin in his system playing with his nervous system. Has he tried any sleep aids? Also, when he has these shaking bouts, is it a continuous shaky or like jerking motions off and on for a while? And does he complain of weakness. I know I was on one chemo regimen about a year ago that caused shaking very noticable especially when eating , my hands gave me away. Did they do labs to make sure is blood work was okay? Possible low on potassium. Does he drink plenty of fluids to help flush the body. Just thinking out loud Gavin to maybe get you on to something that could be causing it. The only other thing maybe, Has he ever be tested for parkinsons? Just Ideas Gavin , but if it continues there is a reason for it and should see the doctor about it. Hope you solve the mystery soon.
Jeff
Stacie and Marion
I wish I could have been there. I just want to echo everyone else, what else can you say; Only that your passion and love for others shines so brightly! I wish I could have been there and met that amazing person. Like I said somewhere else, Cholangiocarcinoma will not be kept hidden any longer.God Bless You Both!
JeffCharlene, I’m also happy hospice is keeping John’s pain under control and glad things have calmed down for you both. These final days I pray for peacefulness.
God Bless You Both,
JeffRank , My prayers are coming your way. My nieghbor, three years ago was the way you described your Dad and it saddens the heart knowing you can’t really do much to help, except love him til the angels come. I pray his pain level stays tolerable, as it can be so bad for some.
God Bless,
JeffH i Mary, I don’t have much to say today ,except I hope and pray the same as you. I’m so happy he is without the pain issues, as that wears you out so much. I’ve got another week of radiation on the tumor pressing in on my esophagus. Tomorrow they are suppose to look at why I’m having so much pain to the lower back spinal area. I sleep with a little tiny pillow under my right side of lumbar area. Only way I can sleep now. Well, we’ll see what another day brings. P.S. Take it easy with your kness. Is there anything you can have done with your kness Mary? Zometa treatments maybe or steroid injection? Just thinking out loud. I had injections in my shoulder joints and it helped tremendously. You can have them every three months if needed. Usually one time last me for almost 2 years. (hydrocortizone) I think it is.
Bless Ya Both,
JeffDarla, Lisa, Lainy…… This is a subject that has come up about a year ago. I provided a bunch of information and some sites. AS a Diabled American Veteran myself, I would encourage anyone to start with the Disabled American Veterans Association. They have Offices at all Veteran Adminstration Hospitals and other VA facilities. They will represent you and provide a cover letter in conjunction with your application and cite the service -connected disability and conduct automatic follow-ups on status of your claims. They also will know how to obtained a list of all currently approved service- connected diabilities by Congress and be able to cite the law that refers to your claim if there is one. The DAV is not VA. They are there to help their fellow service member get what ever compensation they are entitled to by law. I’ve been there and done this. For a different type of diability not CC. Just Google “DAV”. They have the applications and know the system, which is critically slow I might add but going through the DAV ,I thinks helps a little time wise. They can probally save you a bunch of head aches as there is a lot of information required to support a claim for compensation, even more so if it is one never reviewed and approved by a VA medical board and approved by Congress. “DAV” Again it’s free and they don’t work for the VA but for the Veteran. You will always need the veterans DD-214 Discharge certificate. DAV does not do the obtaining of evidence or request for medical records. They lead you in the right direction and monitor, so things don’t get lossed in the system. However if there is an approved compensation approval on file, it’s a big help for you.
Wish you the best. I want to add the DAV is the largest veteran support organization in the U.S.Bless You,
Jeff G.Welcome CS, So sorry to here about your Mom. Like you said her team is perservering. I surely hope only the bestest of out comes. This disease can be so unpredictable in treating some times. If you need help trying to find out any particular information, Don’t hesitate for a moment to ask. Members are ready and willingly to help, if we can.
God Bless,
Jeff GDarla, My deepest sympathy and prayers of support for you. Hold Jim’s memories close to your heart.
JeffThanks Gavin, I have been following all the post about PDT and finally someone who has experienced it comes on board. Sending prayers of support across the waves and hoping your Dad’s results will be the best possible. Michael Jackson outfit hey? Does he have the same moves? Ha! Thanks again for your post!
God bless,
JeffThanks you Guys,
Accupuncture is an option ,but I’ve been using EFT which has helped considerabally, but It is only short term effect for me at the Moment. I”t’s basically the same thing except wthout the needles, but I’ve only been able to gain relief for a couple of hours each time. Lisa, morphine is definitely a mind altering drug, but so far only some wierd dreams. Works pretty good for me, but now I’m back up to the level I was a year ago. So got to figure away to eliminate this soft tissue tumor. Will see Onco in another two weeks and see what he comes up with and we can compare notes.
Cheerio for Now,
JeffThat’s what i’m talking about Kristin! Know where you stand and your body before jumping in with full steam ahead. Lovely!
Jeff
