Discussion Board Forums General Discussion Rejected by Mayo?

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  • #94899
    deadlift
    Participant

    I thought i was pretty common to always start with gem/cis if it’s inoperable before moving on to trials. I know with the ag120 you had to fail primary treatment first. May as well get that out of the way.

    As to some being operable and others not. We’ve all been to high school. There are A students and D students. You never know what kind of surgeon you get. I’ve see seen that with my buddies wife and her surgical issues. She had her case presented to a team of doctors and nobody could touch it, then one doctors all “yah i can make that happen”

    All depends on how good they are sometimes.

    As to the oil and the cost. I’ve heard that it’s spendy. And insurance doesn’t cover it well etc. Though the oil can be more sleepy. My wife just smokes it old school from a bong. so depending on what she has sometimes it makes it harder for her to sleep cause it energizes her. Course she smoked off and on before cancer. The stuff I get for her is dirt cheap. Probably under 400$ for an oz, and lasts her a long time. Trick is to get the kind that keeps her low key. She’s said sour diesel makes her too energetic. She’s had good luck with purple haze and girl scout cookies.

    Good luck!

    #94898
    marions
    Moderator

    Taylor….the 3 months time line is not written in stone, it’s a “likely” prediction only. For all we know your mother in-law will be talking about this cancer for quite a while to come. We experienced it on the board many times over in that patient’s outlived this cancer for years and are going strong. to this date. Take a look at Cathy’s (jathy1125) posting.

    The issue of Quality of life vs. Quantity of life ultimately is made by the patient. Current treatment options offer “hope” but do not guarantee individual success. A cancer diagnosis most often translates into loss of power over one’s life, however the decision of how to address the disease is in the individual’s hand.

    If indeed your mother in-law seeks the recommended treatment then she doesn’t give up the power of either continuing or abandoning the treatment.

    It’s unlikely for any physician to recommend Cannabis. It’s been studied and proven to be successful in many ways, but physicians can refer to any data derived from clinical research studies, which in turn set’s the gold standard of patient care. For our cancer as well as any other cancer we can’t refer to one single outcome of survival with Cannabis.

    From a personal standpoint I strongly believe for cannabis to have a role in all areas of healthcare. We are noticing an explosion in research into the healing properties of cannabis and soon will have clear data to look back on.

    My two cents.

    Hugs
    Marion

    #94897
    taylorjm
    Participant

    I believe it’s the same gem/cis that is talked about on here all the time. I’m not sure if I got that right or not, and don’t have my notes with me.

    Hoping the side effect don’t make things worse. Hard to believe she’s walking around, eating fine, everything is fine, but someone says if you don’t do chemo, you have 3 months to live.

    They have the forms and will be getting a medical marijuana card. Going to try the rick simpsons oil Figure what the heck. Worst case, she gets the munchies!

    Thank you!

    #94896
    marions
    Moderator

    Taylor….so sorry to hear of the visits outcome. Cancer of unknown primary (also called CUP) happens frequently. I recall speaking with a surgeon who pointed out how often this type of cancer often times turns out to be cholangiocarcinoma.

    ” Carcinoma of unknown primary (CUP) is a rare disease in which malignant (cancer) cells are found in the body but the place the cancer began is not known. The signs and symptoms of CUP are different, depending on where the cancer has spread in the body.”
    https://www.cancer.gov/types/unknown-primary/…/unknown-primary-treatment-pdq

    In this case a targeted agent is of new use as physicians would not know which mutation should be addressed.

    I am so very sorry. What type of chemotherapy was suggested?

    Hugs
    Marion

    #94895
    taylorjm
    Participant

    Well, they went to the university of Michigan today, and the doctor spent a long time getting all their questions answered. They were also the only hospital that had the slides from the biopsy. I guess there’s only one set and they were sent to u of m first.

    So it’s not good news. It seems she has some form of systemic cancer. The cancer cells are throughout her body, they just happened to take up shop in the liver first as CC. That’s why they have been recommending systemic chemo. The other doctors just didn’t bother to tell us why that’s what they were recommending. This is also the first dr to actually give a time frame. She went to the hospital last month with a stomach ache, which went away, now they are saying she has 8-9 months with chemo, or 3-4 months without it. Hard to believe since her liver is still fully functioning and has no other symptoms. My wife is going to still try to convince them to try cannabis oil. So we’ll see.

    #94894
    marions
    Moderator

    Cathy…..thanks for chiming in on this.

    Hugs
    Marion

    #94892
    positivity
    Participant

    That’s incredible your transplant worked out Cathy. I wonder if they select by age also. We chose to eliminate this route as my mom is in her 70s and too risky, also a high chance of not being approved. Also, she had another medical condition which would increase her risk. It’s nice to hear a story of success!

    #94891
    jathy1125
    Participant

    Taylor, I am 9 years out in my CC fight. I was blessed to have been able to have a transplant. Transplants are very controversial still in the CC world, you really need a doctor who believes it is an option, the Mayo Clinic is one. I am in IL. and was cared for by the most amazing doctors at Barnes-Jewish in St. Louis MO. my hero is Dr. William Chapman. I have shared my story enough that several of our CC family from all over have contacted him and some have had the prognosis changed for the better. I know that one gentleman who was considered non transplant from Mayo Clinic, contacted him and Dr. Chapman was able to transplant him and is 3 years post transplant. ICC is usually not a transplant options, but things are so different now then 9 years ago. Dr. Chapman is one of the most kind, gifted doctor you will come across, he is vey knowledagble and respected in the CC world he is also very phone friendly and moves quickly because he knows time is not our friend.
    Here is my story http://www.catherinedunnagan.com
    Please let me know if I can help
    Prayers for answers and comfort at this time
    Cathy

    #94893
    taylorjm
    Participant

    Thank you Marion for the information. I’m learning more from here then the doctors! We were never told that intrahepatic was not qualified for transplant. And I believe the tumor is about 7cm, but not positive. If they would have just told us that, we would have been fine, but instead all we hear is “no, she can’t have a transplant”…..um….why??? Yes, actually want to know why… it’s like pulling teeth to get information from doctors!

    So do you know if intrahepatic is able to receive a part from a living donor?

    The wife is going to talk to her mom about signing up for medical mj tomorrow. She told me I should be the caregiver so I can go buy the oil for her! Great….now I’m going to be a dealer?? I don’t hear any negative drawbacks to taking the oil, except for cost. And it supposedly really helps you sleep. So I’m not seeing a downside, and if it helps, great, if not, she gets an expensive sleep remedy.

    #94890
    marions
    Moderator

    Taylor….Sounds like things are moving forward as should.
    In regards to liver transplantations there is a strict protocol to follow.. The Mayo Clinic Protocol excludes intrahepatic disease for possible transplant, which I believe your mother in-law has. . Don’t know the size of the tumors, but for those seeking liver transplantation with tumor size in excess of 3 cm also are excluded.

    This is a great article you may be interested in:
    http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0156127

    I can’t think of anyone not wishing for a drug less harmful to the body than that of chemotherapy. I believe the day will come, but a the present research is not quite there. Having said that, it’s likely for a molecular target to be identified in your mother in-law’s tumor tissue, which will allow her to enter a clinical trial. Most likely she will have to undergo chemotherapy treatment for some time prior to participating in such a trial.

    Totally agree that medical marijuana has a place in medicine. Unfortunately, we don’t have any evidence of it’s curative action in cholangiocarcinoma. Wish it were so.

    Wishing for the best of luck with the upcoming visit and please keep us posted, we care and we are in this together.

    Hugs
    Marion

    #94889
    taylorjm
    Participant

    Thanks everyone. They had a consult with a liver surgeon at University of Chicago. He didn’t feel it was operable at this time and mentioned some more targeted possibilities for chemo or radiation. He didn’t explain why surgery isn’t an option, and said transplant isn’t an option either. Not sure why since everything is contained in the liver. He’s taking her case to the tumor board there tomorrow, and wants her to follow up with the liver tumor clinic to figure out the best plan of attack. They weren’t real impressed with the dr, but he was rushed and they expect him to spend hours with them answering every question. Me, I understand they have a job, and they can’t do that.

    Wednesday, they have an appt with university of Michigan which is about 90 minutes away. She is meeting with 3 different doctors that day. I believe it’s a oncology surgeon, medical oncologist and radiation oncologist. So hopefully they will get all their questions answered. I would just like them to be able to do some more targeted therapies instead of filling the entire body with chemicals that wipe out everything. We are also researching more on the rick simpson oil, since medical marijuana is legal in Michigan. My wife has been researching medical mj for a long time prior to this illness, it’s just a matter of if she can convince her mother to do it. I’m just starting reading about it and it seems that a good supply to help clean things out would be 60g and I think that lasts 60 or 90 days? I’m not sure. Then a maintenance dose. The initial dose would probably be about $2800 then about $80 a month for the maintenance dose. But I’m just starting to read about it.

    #94888
    bglass
    Moderator

    Jeff, let me chime in with some observations on the criteria used in determining if surgery can be performed in a case of intrahepatic CCA, based on my own experience as a patient.

    What I was told during my medical consultations at the time is that to be operable, the cancer generally must be confined to the liver, in other words it cannot have spread. In my case, my recent colonoscopy and mammogram results were considered to verify no other cancers were going on and I was sent for an endoscopy, in addition to the scans of my liver. There is also a calculation made of how much of the liver would have to be removed, as there needs to be enough left behind for healthy liver functions. The doctors also must look at how difficult the surgery would be, e.g., is the tumor wrapped around major veins or are there other features that would make surgery highly risky.

    In my case, the tumor was large, spanned both the right and left lobes and was near a major vein. These factors were why I was originally deemed inoperable and was advised to have chemo first to shrink the tumor to a point where surgery would be less risky. Subsequently, a surgeon took a second look and felt surgery could be possible. As a first step in the operation, he examined the area laparoscopically to be sure there was no spread and that the planned surgery was feasible.

    The advice to try chemo when surgery is not immediately possible is not uncommon, and as you can read in postings on this board, a number of surgeries were made possible by the initial chemo. In addition, other liver-based treatments may be possible should surgery not be an option.

    It is also my experience that outside of doctors who specialize in liver cancer, most others have seen few or no cases of CCA.

    I hope your mother-in-law’s upcoming medical consultations are fruitful, and result in a clear treatment plan.

    Regards, Mary

    #94887
    marions
    Moderator

    Taylor……It stil isn’t clear to my why Mayo responded the way you describe. By no means does it mean that treatment options are not available. Please tell your mother in-law that one poor response from “whoever” does not indicate all other investigations are futile. In fact, the opposite is true, but given the rarity of this cancer, multiple consultations with experts treating a high volume of our patients is a must.

    This may very well not be her last consult, but it’s a good start of the process regarding investigation of the most beneficial treatment for her cancer.

    Nothing is easy about this cancer, but it can be beat.

    Tons of good wishes

    Hugs
    Marion

    #94886
    taylorjm
    Participant

    Thank you! I’ll keep you posted what happens. Yes, the oncologist they saw didn’t seem very familiar with this type of cancer at all. He didn’t discuss what type of chemo yet either. Also, didn’t discuss what stage she is at, prognosis, or anything like that. He just said he’s very concerned with making sure the quality of life is there, and in this instance, he thinks chemo would be beneficial. When it was brought up they were going to University of Michigan, he said that would be a good idea because maybe their surgeons would know more about this and be able to help because he isn’t comfortable operating on her right now. Um, if you aren’t comfortable with this case, then why didn’t you suggest going somewhere else? Why was his first thought “we’ll use chemo and see if it shrinks the tumor down”. They asked if he had any other patients in a similar situation that they could pass their name to and see if the person would want to call and talk about their experiences. He said he doesn’t have anyone in her situation. So, is that because it’s rare? Because they went somewhere else? Or because they died? The MIL wanted to just get it started right then and there, but my wife convinced them to look for a second opinion, which is what lead to my post about Mayo. But if Mayo doesn’t think there’s anything else that can be done, why would university of Michigan bother to setup the appointment? Same for University of Chicago, if there’s nothing that can be done after looking at the records, why would they bother having her come in? Such a new experience, but being rejected by Mayo is really bringing the MIL down. We told her, there’s a long list of other hospitals, and we’ll try some more before just giving up because Mayo said so.

    #94885
    marions
    Moderator

    Taylor….welcome to our site. Most likely Mayo confirmed liver transplantation is not an option, hence they agree with the recommended course of action. For all further information, most likely your mother in-law would have to become a patient within their institution.

    The upcoming surgical consult (most likely) will confirm the fact that at this time a surgical resection is not feasible.

    The next step, appointment with University of Michigan, will be of great importance. Make sure to discuss molecular testing already mentioned by you.

    Armed with the information coming your way, a clear course of action will evolve.

    Hope this helped.

    Good luck and please be so kind and stay in touch. We are here to help and we are in this together.

    Hugs
    Marion

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