violarob

Forum Replies Created

Viewing 12 posts - 61 through 72 (of 72 total)
  • Author
    Posts
  • in reply to: Fever therapy #20770
    violarob
    Member

    Dear Jeff: Ahah! I suspected you were doing your own home-made hyperthermia treatment from a post you wrote for “Cancercompass”.

    For some real “cooking” I hope to become eligible for radiofrequency ablation this summer. I am getting off-topic, but have you tried any ablation therapies?

    Violarob in Texas

    in reply to: Has anybody tried Chemoembolization? #17361
    violarob
    Member

    Dear Jeff: Ooops! what I meant to say was that I take the Tarceva (erlotinib) 150 mg tablet every day. The cisplatin and gemcitabine are given by IV drip infusion once every 3 weeks.

    in reply to: Need advice: which major cancer center? #20936
    violarob
    Member

    Dear Kristin:

    I really like the care I am receiving at MD Anderson cancer center in Houston. They are on the cutting edge of all treatments and clinical trials. They are very “fast track” for visitors out of state. Also, they are very comfortable with recommending a treatement plan and then having it implemented by the onco doc of your choice at home.

    Good luck to you! I hope you find a doc who you trust, and gives you a good result.

    Violarob in Texas

    in reply to: New member in Houston, TX #20800
    violarob
    Member

    Hi, everyone. Thanks for welcoming me to this forum. I visited Kelly’s blog, but frankly found it depressing so I did not read much of it.

    My oncologist at MD Anderson is Milind Javle. I like him a lot. He specializes in oddball variations of cholangiocarcinoma. He is the only onco doc I have found who has actually treated my unusual diagnosis before. I originally requested to be treated by Melanie Thomas, but she seems to be concentrating on clinical trials these days, and I do not qualify for any of the current trials at MD Anderson. (I did not know she was practicing elsewhere now; she is still listed on the faculty at MD Anderson.)

    My overall experience at MD Anderson so far (3 months) has been overwhelmingly positive. My disease has been stabilized, and I have not had any side effects at all from my meds/chemo infusions. I have no mets outside the liver. I feel lucky in that only 2 tumors are clearly seen on CT, both of them only 1 cm in diameter. I don’t want to ramble on and on, but I am happy to give details of my situation to anyone who is interested and feels they could benefit from my personal experience as a cancer “newbie”.

    Violarob in Texas

    in reply to: Controlled Amino Acid #14267
    violarob
    Member

    I did some research on the CAAT protocol as developed by the A.P. John Institute, when I was first diagnosed. I adopted many of the dietary suggestions and recommended supplements without paying the $1,000/month for the amino acids and personal consultations.

    The CAAT protocol is actually very similar to the diet and supplement program recommended by Patrick Quillan in his book, “Beating Cancer with Nutrition”. This book is a classic in cancer treatment, dealing with diet, supplements, vitamins, minerals, alternative treatments, etc. I highly recommend it as a starting point. It is also loaded with references to articles in standard scientific/medical journals for those who want to verify facts and claims made for various supplements and treatments.

    I feel I have benefitted from the information I got from the A.P. John web site and from the Quillan book. I don’t think it is necessary to fork over the $1,000/month, but that is a personal judgement call. Some people really appreciate having a personal coach to guide them, and believe in the extra benefit they get from the amino acid formula obtained from A.P John.

    Good luck to those trying a dietary regimen to fight their cancer!

    Violarob in Texas

    in reply to: Milk Thistle #18963
    violarob
    Member

    I take milk thistle every day. Before I started taking the milk thistle, I never had a platelet count above 95k. (I have chronic low platelets from 20+ years of hepatitis B infection and cirrhosis). After starting the milk thistle I have consistently had platelet counts of 103-123k, which is my best ever in 15 years. I am convinced the milk thistle is responsible in part for this change.

    In addition, milk thistle is thought to potentiate chemotherapy treatment. There is a phase II study regarding milk thistle in conjunction with chemotherapy for hepatocellular carcinoma. (see http://www.clinicalstudies.gov)

    Anyone else out there taking milk thistle?

    Violarob in Texas

    in reply to: Fever therapy #20764
    violarob
    Member

    hyperthermia treatment: I did a whole bunch of research on this 2 months ago. The options in the US are paltry. There is one clinic in California which is doing work in hyperthermia. Cancer Treatment Centers of America has two locations which do some hyperthermia treatments (Tulsa and Philadelphia). There is a phase II study in Houston, at the University of Texas Medical School, being administered by Joan Bull, M.D.

    There are two basic types of hyperthermia: One is regional or local, which is administered by radio wave diathermy directly to the affected area. This is effective only if the tumor(s) are less than 4 cm from the surface. The second type is called whole body hyperthermia, where the temperature of the entire body is raised to fever range (103-105 degrees) for a long period of time, up to 6 hours. There is a clinic in Germany (the Klinik St. Georges?) which offers hyperthermia. Don’t know anything about them.

    I have adopted my own hyperthermia method which I implement at home. 24 hours after I receive my chemo infusion, I spend an hour in the jacuzzi, until my body temperature raises to 102 degrees. I then dry off and rest on the couch wrapped in blankets, with a heating pad on my abdomen. It takes about an hour for my core body temperature to return to normal. Please do not try this on your own until you have done LOTS of research online about the different methods used and precautions needed.

    The basic concept: Raising the core body temperature has been shown to stress the tumors, making them more susceptible to the chemo. Results vary widely from person to person. I know of others who spend 15-20 minutes per day in a dry or wet sauna to raise their core temperature each day to stress the tumors and to sweat out toxins.

    There is lots of info on the internet on hyperthermia. Good luck to those who are interested in this subject!

    Violarob in Texas

    in reply to: Gemcitabine and Tarceva, side effects? #16916
    violarob
    Member

    Hello all; I am new to this forum.

    I have been taking Tarceva (150 mg/day) for 3 months now. I had acne and a little diarrhea the first 3 weeks, but no side effects since then. The onco doc said that the acne response is actually “good”; his patients who get the acne are the ones who seem to get better results. I have also been infused with gemcitabine 4 times. I have had absolutely no side effects from this medication. As a matter of fact, I eat dinner and play on my computer during my infusion. Maybe I am atypical, but I have had virtually no side effects from my meds since I started them 3 months ago.

    I might be different, since I do not have classic cholangiocarcinoma. I have something called mixed hepatocholangiocarcinoma; a hybrid of the two cancers.

    I am enjoying this forum and the free flow of information here!

    Violarob in Texas

    in reply to: Platelets loooooow! #19941
    violarob
    Member

    Hi, Jeff. I am new to this forum. Platelet count of 42 is not too bad. I have very wide swings in my platelet count after chemo. I go down to about 50-60, then back up to 105-123 ten days later. I was told it doesn’t get really dangerous until you fall below 35k. I don’t know of any drugs that help with platelet formation, but I started having better “bounce back” after I started taking Milk Thistle (sylimarin) supplements. (BTW, are you also “JeffGer” on the CancerCompass forum sponsored by CTCA? I think I corresponded with you a couple of months ago on that forum.)

    Violarob in Texas

    in reply to: Has anybody tried Chemoembolization? #17359
    violarob
    Member

    I had transarterial chemoembolization done at Baylor Liver Center in Houston. The chemo agent was doxorubicin. I don’t know what the embolizing agent was. I had a very bad reaction after the procedure (inflammation, fever and very intense pain for hours, requiring multiple injections of fentanyl). Before the procedure, they told me that in their experience only 50% of those who do it get tumor shrinkage. I don’t know if I benefitted or not, because I transferred to MD Anderson a month later and started a completely different type of therapy. In that one month, the tumors did not shrink, but did not grow either.

    I am now on gemcitabine and cisplatin, with Tarceva every day. I feel good and am doing well. Disease is stable according to CT scan.

    Violarob in Texas

    in reply to: Radioembolization for unresectable tumors #16259
    violarob
    Member

    Question on this thread: Is direct infusion the same as chemoembolization?

    They are similar, but not the same. They are both done through the femoral artery, with the chemotherapeutic agent injected directly into the liver through the hepatic artery. With direct infusion or HAI (hepatic artery infusion) the chemo is injected over a period of hours or even days. With transarterial chemoembolization (TACE), the chemo is injected as a single shot, which is followed by a small globule of “fat” to lock the chemo in place inside the tumor. You can read more details about these two procedures at the MD Anderson website. There are benefits and drawbacks to either procedure.

    in reply to: Gem Cis Combo Working #20104
    violarob
    Member

    Hello, Pearland.

    I am also being treated with gemcitabine and cisplatin. I get my infusion every 3 weeks. In addition, I take Tarceva (erlotinib) every day. I have had 4 infusions so far. My recent scan showed stabilization; no growth. I am feeling great, and have absolutely no side effects from any of these drugs. I hope you continue to do well.

    Violarob in Texas

Viewing 12 posts - 61 through 72 (of 72 total)
©2019 - All Rights Reserved, Cholangiocarcinoma Foundation