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Thread: Jim's Update

  1. #1
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default Jim's Update

    ((((((Hugs to All)))))) ~

    Jimís x-ray from last Tuesday reveals that cancer is possibly spreading throughout his lungs.

    He waited 3 weeks after his last round of chemo, expecting to start Keytruda, and was told that the chemo hadnít helped him. He now qualifies for a test study, where his biopsy tissue will be examined and a drug to target his specific cancer will be utilized. This is IF: he gets into the study; he has enough tissue from his biopsy (may need another one, which extends the length of time for testing/treatment); cancer doesnít kill him before the results come back.

    His oncologist had to have known that Jim needed to fail these useless chemo drugs to qualify for this testing and targeted drug treatment. She should have told him this up front.

    I wonder how many Stage IV lung cancer patients have done well on those two chemo drugs. Iíll bet not many, if any.

    We are quite upset/angry about the wasted time, and Jim suffering side effects from those chemo drugs now.

    Jim will see his oncologist on Tuesday to opt into the testing program, and sheís going to get an earful from Jim.

    We endeavor to keep a positive attitude, to trust and believe in the best and right outcome. But this has been disheartening to say the least. Itís hard to hold your chin up, when so much is pressing down on the top of your head.

    We thank you all for your continued love, prayers, support, and compassion.

    Love & Light,

    Rose
    Mom to Jon, 47, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  3. #2
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    Rose, My heart literally sank when I read this! I'm so sorry that the treatment didn't help. Also that you were not given full disclosure! Holding back information is lying. Not ok! I will pray so hard that Jim can get into the study and kick ass with this awful disease! Thank you for keeping us updated If you don't mind I will also ask some friends on a closed group for prayers, they're prayer power seems to be incredibly strong and has helped us through some really difficult times. I hope you're able to keep a positive attitude even though it's difficult I believe it can really help our bodies. Is JIm able to get out and walk? I have a neighbor who has had some health issues back surgery and liver cancer. He started walking right when he was diagnosed and It really seemed to help.
    Mary Grace

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    Hate hearing this Rose. Why can't things just go as planned? That doctor should have been upfront on the protocol from day one. Why waste time when they knew it wasn't going to work? So frustrating. Have no idea why, when the cancer is that advanced, he wasn't put into the study immediately. That's just wrong on so many levels!! Praying Jim is able to get into the study and actually be able to start fighting back. Take a deep breath Rose, one foot in front of the other and don't look back. We are all storming the gates of Heaven for you.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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  7. #4

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    Dear Rose,

    I am sorry to hear that Jim's results were not what you were hoping. It is disappointing for the both of you. I wish the doctors were more upfront about the diagnosis and all treatment options were made available from the beginning. Lung cancer sucks! My uncle was just diagnosed with it and today they were finding out what they were going to do.

    Continued prayers being sent up for all of you. I hope you will receive the answers that Jim needs to help fight.

    Marcie

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    Oh no. I'm so sorry Rose! I was actually just giving a speech on the importance of disclosing and then I read this and I got really pissed. Sadly it seems docs always opt for chemo when it may not always be the best thing. I pray Jim will get into the study and will do well! I also pray the chemo gets out of his system!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  11. #6
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    Rose, what awful news! All this carp may have delayed his real treatment. I am sorry and also mad!

    ANN
    There comes a time when silence is betrayal.- MLK

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    How terrible, that he had to go through all that. Doctors have an obligation to be upfront about treatments they're offering, I think. Something important was left out of the discussion.

    You must be frustrated and angry and very sad. (((((Rose))))))
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  15. #8
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    ((((Rose))))

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  17. #9
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Thank you, each of you, so very much for your love, prayers and support.

    And yes, Mary Grace, Thank You for adding us to your prayer group. We need and are grateful for every prayer, positive thought, and healing energy we receive.

    As you said, Tamie, this is the protocol for patients who have Jim's specific lung cancer ~ non-small cell squamous carcinoma. So only patients with this diagnosis are allowed to be part of the study. And the protocol to be eligible for targeted treatment is to take these two chemo drugs first. If they fail, you're a candidate for a drug that should treat your cancer and hopefully extend your survival time.

    After Jim's first round, he received a glossy pamphlet brochure in snail mail from Caris, the molecular/DNA company in Phoenix, which specializes in biomarkers for cancer treatment. Jim has asked several times whether this study is related to that literature, and he hasn't gotten an answer.

    To me it's inhumane and cruel to give chemo drugs to any cancer patient, knowing that they won't help, but will qualify the patient for help later. Especially a metastatic Stage IV patient.

    Even at Disneyland, if you're in a wheelchair, you go to the front of the line for every ride and attraction.

    Shouldn't Jim and his fellow patients go to the front of this line?!

    Jim's oncologist told him before Round One, "These drugs aren't likely to help you as much as they should, but we're going to try them and work up from there.' She didn't say, "The reason for that is that you have to fail these rounds to qualify for treatment with a drug that will help you."

    Marcie, please share our experiences with your uncle, so that he can avoid these pitfalls. We are dealing with a major hospital, with a high ranking, state of the art equipment and facilities, outstanding physicians, and a large cancer center.

    Tell your uncle to write down questions to take with him and to bring a family member or friend with him to his appointments. Unfortunately, I can't go with Jim, as we have no one to care for Jon. And Jim's appointments are in the morning, exactly when Jon needs flushes and meds in his G Tube.

    Cancer and chemo scramble one's brain, regardless of where it's located in the body. Memory loss is common, getting confused easily, dizziness, nausea, it's all there and known as "Chemo Brain." But it's a combination of things, like changes in blood chemistry, anemia, low white blood cells, which contribute to this brain fog.

    Demand answers! As Jim says, "This is my body and my life. I have a right to know everything."

    If the protocol for your uncle is to start chemo with a "platin" drug and another drug simultaneously, then it could be a setup for this trial study. So tell your uncle to ask his oncologist, "Will this drug help me? How much? How long will I be on it? How do you know if it's working?"

    Funnylegs4 ~ This is a perfect example of "progressive disclosure," which you and I were discussing in the "Speechless" thread. Only this is real life. And possible death. Keep speaking out about disclosure, particularly as it pertains to health issues. What you don't know may kill you. And doctors take an oath to "do no harm."

    Thank you, Ann, for being sorry and mad on our behalf. Yes, it clearly has delayed what could have been life saving treatment. Which we pray and hope will be life saving treatment for him.

    But there are more delays in being accepted into the program and having enough tissue from his biopsy. How long will it take to schedule another biopsy, if there isn't any leftover tissue? How long will it take to get the sample to the lab? How long will it take to identify the biomarker, then the right drug for treatment?

    Does he have months to wait for all of this? We don't know, but it doesn't look good for him with the rapid expansion of "metastatic process as a consideration" noted on his x ray findings.

    We are very sad, Agate, indeed. I recounted the history of this journey with Jim today.

    Dec. 8, saw family doctor, had x ray; mass identified

    Jan. 4, CT scan (yes, nearly a month before he could have a CT scan, which confirmed cancer)

    Jan. 5, consult with pulmonologist, confirming cancer

    Jan. 13, biopsy

    Jan 23, PET scan

    Jan. 24, first oncology visit ~ Jim's 69th birthday

    Jan. 26, MRI of brain

    Feb. 7, ENT doctor to rule out infection prior to Chemo Round One

    Feb. 9, Port placement in clavicle area for Chemo infusion

    Feb. 15, 16, 17 ~ Chemo

    March 8, 9,10 ~ Chemo

    March 28, Chemo cancelled for Round Three, option to join study offered

    Three weeks between each Chemo Round. That's 9 weeks with nothing happening to help Jim. All totaled, 4 months since the mass was identified on the x-ray.

    SuzE-Q ~ thank you for your hugs and loving energy.

    And Moderator #7, thank you for stopping by and for your volunteer efforts in keeping BrainTalk a safe place for all.

    I will update here, when I have more news. Thank you all for your love, prayers and support.



    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 04-03-2017 at 09:24 PM.
    Mom to Jon, 47, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  19. #10
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    Rose, there was news yesterday of a new treatment for brain cancer. This article discusses it. In a different article, it was said it can help lung cancer, ovarian cancer and pancreatic cancer

    https://www.bostonglobe.com/news/nat...1bL/story.html

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