kentuckyjack
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Hello InGodsHands–
May I recommend a new book entitled “Knockout!” by Suzanne Sommers, the celebrity star-health author. In it she interviews several “cutting edge” cancer doctors who are curing cancer patients with “outside the box” treatments, often other than radiation-chemotherapy-surgery.
P.S.: I’m in St. Louis so hello, neighbor!
God Bless you and your papa.
-Tom
MattyD- Hello to you!
FYI- I have ICC, unresectable, very large tumor originally. Diagnosed Jan-Feb 2010. Treated with Gemzar, Xeloda, and Oxaliplatin chemo from March-June, in addition to naturopathically-recommended supplementation. Tumor shrunk by perhaps 1/3 or more to just over 1/2 to 3/5 its former size, depending on the type of measurement. Could take no more chemo at that point because of blood and platelet counts/bone marrow threat. Now scheduled for SBRT (external radiation) over the next two weeks, after which the chemo onc says he will continue me on Gemzar and Xeloda only starting at some point after completion of radiation.
Hope this info is of help.
God Bless you and yours.
-Tom
Hello Capodad-
Among the many supplements my naturopathic cancer specialist at Life Extension Foundation has suggested is Coriolus Versicolor mushroom extract, also called turkey tail. I’ve had a little trouble with it–I may be allergic to mushrooms. That being said, I read that is it the standard treatment of choice for cancer in Japan, and China is developing their own version of it, as well. If you get cancer in Japan right now though, I think they pretty much give you the “turkey tail.” We’ll see how it works for me, if I can continue to take it. (I,m actually taking the Chinese version right now, known as PSP, but my next bottle is versicolor.)
God Bless you and yours–
Tom
Lainy & Teddy:
May the Good Lord bless you both with a pain-free and clear view of the light on the high road ahead. Keep those hugs and grins a-poppin’. My prayers are with you.
-Tom
Hi Theresa-
I got a recommendation from the Life Extension Foundation cancer naturopath to take shark liver oil prior to radiation. He says it will increase my platelet count, but I’m not sure about the white blood cells. Apparently it is very good at getting the platelet count up, as he advised me to be sure NOT to take it if my platelet count got too high. You might google it. I think it may help with the WBCs.
CapoDad: I’m sorry for your predicament and glad to welcome you as a member of this cancer-fighting club. You’ve got a lot of good people pulling for you.
I don’t have much to offer to answer your specific questions, but I have two bits of information to offer you:
1. Most likely you have been told that surgery is the only hope to cure this cancer. Postings I have read on this board indicate that this may not, in fact be true. However, one thing that may have prolonged my life to this point is the fact that I sought a second opinion from a surgeon who operated on livers every day–a liver specialist. My first surgeon was a general surgeon who did not specialize in livers, and he was prepared to operate, but my second opinion specialist reviewed the material and conducted one more test, and then declined to do the surgery. Based on his recommendation, I’ve spent several months in chemotherapy (Oxalyplatin, Gemzar, Xeloda) watching my tumor shrink, and now I’m scheduled for radiation which has some chance of controlling my intrahepatic cholangiocarcinoma. I don’t know if my liver specialist should reconsider doing surgery now that the tumor has indeed shrunk–maybe I need to seek out a bolder liver specialist. But I DO know that if I ever have surgery, I want a surgeon who deals with this area every day.
2. I am reading a new book written by a celebrity who lives near you–Suzanne Sommers. The title of the book is “Knockout!” Ms. Sommers has written extensively on health and nutrition as a second career. She’s survived breast cancer and some really bad disasters with medical care in your area. So her book details her interviews with doctors who are taking non-traditional approaches to curing cancer. Her book also details her interview with the head of an organization of which I am a member, the Life Extension Foundation. They conduct research and publish a monthly magazine which both promotes the nutritional supplements they produce and publishes articles on cutting-edge treatments for diseases such as cancer. Life Extension also offers a telephone hotline with naturopaths who specialize in cancer. Membership is $75, and talking with the cancer naturopath is free. If you ask, their naturopaths will recommend nutritional supplements which may increase your ex’s odds of survival. I’d recommend at least reading the book.
Hope this helps. God Bless you all.
I’ve been overwhelmed by procedures and pending decisions and information by a multiplicity of sources in the new(to me) and strange area of radiology for the past month. Comments from several of the docs involved are: “The stereotactic radiotherapy (Stereotactic Body Radiation Therapy–SBRT) for you has a very good chance of getting some result, is very unlikely to cure it, it may however more or less permanently control it.” “I don’t know if the damaged liver lobe will regrow after radiation as it would after surgery.” “The main side effect of your SBRT is fatigue lasting from one week to one month.” “You won’t be considered for adjuvant follow-up chemotherapy for two months after the end of your stereotactic radiotherapy treatment.” “After treatment, there is a 60-70% chance that the cholangio tumor will NOT grow back at the exact same spot.” “The SBRT WILL likely stop all visible cancer in the tumor, which means that the tumor will likely stay where it is, but will NOT grow forward.” “Although there is a 60-70% chance that the cholangio tumor will not grow back at the exact same spot, statistically there is also a 60-70% chance that metastases WILL grow elsewhere with ICC patients.”
There’s been a good bit of information to collect and digest. Next week, I see my chemo onc again and will inquire of his opinions about recommensing chemotherapy in place of radiation or following radiation. The radiology onc said there would be no adjuvant radiation to the exact same tumor location since I would be getting the highest allowable dose with the scheduled SBRT. Subsequent surgery is extremely unlikely due to marked scarring from radiation. Radioembolization with microspheres has been ruled out, as well. SO, my choices of traditional treatment are narrowing.
My choices of treatment are also narrowing by law, since I have now completed the transition from Blue Cross/ Blue Shield to Missouri Medicaid–which limits my choices to treatments and doctors to those practicing in the State of Missouri. (Ain’t health care reform grand? But seriously folks…..).
The GOOD news for me is that CT scan results from 8/10/2010 indicate that the measure of my tumor reveals still-continuing shrinkage from 5.6 cm AP X 6.2 cm transverse on 6/17/2010 down to 5.4 cm AP X 5.0 cm transverse. It seems to be a little over half as big as it was when chemotherapy was started in early March this year. The other GOOD news is that the CT report said that there is still “NO CT evidence of metastatic disease.(!!!)” Thank God, nutritional supplementation, and chemotherapy!!
So, having passed through the CT scan hurdle, my old body appears to have qualified for the SBRT clinical trial. The radiation treatments, each lasting about an hour, are scheduled for the last week in August and the first week in September, and there are five of them.
The OTHER GOOD news for anyone qualified and interested is that my radiation oncologist at the Siteman Cancer Center/Washington University and Barnes/Jewish Hospital of St. Louis is seeking calls from those qualified and interested in participating in his SBRT clinical trials. I am emailing Marions with details, but he said he ONLY wants prescreened calls from those whose cancers have been determined to be non-resectable, preferably having been treated with the standard chemotherapy regiment for ICC or HCC, and with absolutely no metastases or lymph node involvement.
Hello Mlidoudou:
Let me be brief and blunt. I sought a second opinion from a cancer surgeon and cancer center with specific expertise in liver and bile duct cancer, and I may be alive today because of it. While I do not qualify for surgery, I still plan to ask for more chemotherapy after a planned course of radiotherapy. I just want to kill all the cancer that I can! Second opinions and follow-up chemotherapy? YES! I”m also trying coriolus versicolor mushroom extract along with a mountain of other supplements for as long as I can.
God Bless you both!
-Tom
Hello, Sallypa: I’m just a fellow-cholangiocarcinoma sufferer diagnosed in Jan-Feb 2010, and I’m sorry to hear of your sister’s diagnosis.
Looking at what your’e asking for in your last posting, I can say that it is possible that I am alive today because I sought a second opinion. Yes, cancer may keep growing until successfully treated, but a second opinion may have saved me FROM surgery.
My first offer of surgery came from a general surgeon at a local hospital with a cancer center, but the surgeon was not a specialist in liver surgery. Friends and family guided me to another hospital with a National Cancer Institute affiliation and a relationship with a medical school. The chief of the relevant department reviewed my case and eventually decided that I was not, after all, a candidate for surgery, because the tumor had vascular involvement and was just too large to get out with what they call “clear margins.” I’ve taken several months of chemotherapy instead, and the tumor has shrunk, and now I’m being scheduled for a radiation procedure.
To access a list of major cancer centers, look on the bar on the discussion boards page, and you’ll find them listed under “Newly Diagnosed” which is towards the left right next to “Home.” Several people have said that Mayo Clinic is the very best, as they have the most experience with bile duct cancer. But there are several other cancer centers with advanced expertise in dealing with bile duct cancers. The board members and senior members can help you further in this area, I’m certain.
God Bless you both!
-Tom
To all: On July 27, I went in to the Siteman Cancer Center at Barnes/Jewish hospital of St. Louis, MO for an arteriogram/mapping session to inspect the routing for my planned radioembolization on August 11. The mapping session was ended early when the docs found that the tumor-blocked blood supply to the left lobe of the liver had caused the arteries/veins to atrophy beyond the point where they would allow safe passage and planting of the microspheres for successful intervention. The doc in charge said there were still treatment options which, although less ideal than radioembolization, would offer hope for shrinking/killing the tumor.
Today, July 30, 2010, I received a call from the chief Interventional Radiologist, who discussed Siteman’s next proposed course of treatment. He proposes to use their stereotactic equipment for stereotactic radiotherapy/radiosurgery. This involves 5 sessions (over two weeks) of external radiation aimed at the tumor from a variety of different angles so that the radiation received by the tumor will be much greater than that received by surrounding tissues encountered by the radiation beams en route to the tumor. Few side effects are to be expected, possibly including some heartburn and mild queasiness/nausea–and I should be able to drive myself to and from the sessions.
They have a triplex (?) unit that includes three different treatment devices, according to the Siteman website–I think they’ll be using the basic stereotactic part on me. The good news is that over a period of a few months after the radiation, it should become apparent to what extent the treatment is successful. The disadvantage of this procedure over the originally-planned radioembolization/microspheres is that the stereotactic procedure only gets the cancer that is visible on the imaging devices, whereas the radioembolization/microspheres would have penetrated more deeply into the liver to get at cancer that might not show up on the images. The other disadvantage (?) is that the stereotactic radiation is considered only as a replacement for surgery in my case. According to the Interventional Radiologist, the aftereffects of the radiation include scarring of tissues which will render surgery impossible.
Overall, it seems that the sterotactic radiation therapy edges more toward the palliative than the curative treatment that I’d hung my hopes on, but if successful, it should buy me more time and perhaps, after follow-up chemotherapy, a return to work.
Well. there’s my “show and tell” for the week, and what a week it has been. Severe disappointment on Tuesday turned to less-than-ecstasy for Friday evening, but with a sincere “Thank God” for a treatment option with continued hope. A good weekend to any and all interested parties.
Jill-
FINALLY, I can say that I appear not to have had any PET scans, so Blue Cross/Shield didn’t need to pay. Now I am beginnning to deal with Medicaid, and that is a new challenge, as my COBRA Blue Cross/Shield expires 8/1/2010.
Hope you are doing well.
PS: I appear to have had CT, MRI, MRCP, and Ultrasound.
So sorry to hear about your Dad–but he has you and that is a blessing!
I am aged 60 and was diagnosed with intrahepatic cholangiocarcinoma in January-February 2010. During a 4-month period on chemotherapy, I received chemo one week followed by one week of recovery, then repeated the process. (My tumor has shrunk.) I’ve been pretty worthless during the chemo weeks, but I’ve fought to take walks, exercise and rebuild during the recovery weeks. The people at the YMCA where I work out have been so very supportive, and the exercise itself produces the endorphins which are actually an antidepressant. Fighting the depression through exercise and social support at the Y are part of my treatment plan! May be you see a comparable path for your Dad.
God Bless!
Congratulations on getting the new treatment plan, Mr. Rick. The fact that it gives you hope gives me hope, too, as I am set to receive similar treatments. I go in for mapping on the 28th, to be followed, hopefully with microsphere radioembolization on August 11. God be with you and me, too! God knows you deserve this new hope after recent events.
Blessings.
I cannot yet attest that alternative treatments work, since I’m not cured, BUT: I recommend that you look into Life Extension Foundation. For a $75 membership, you get a research-filled magazine monthly on supplementation, health, and of course the opportunity to buy their supplements. You also–very important–have the oppportunity to talk by telephone with one of the Naturopathic Doctor–cancer specialists. The doc will, at your request, take all the information you have on your cancer, and provide you with a list of supplements that he best believes may help you with your particular situation. Additionally, their website has cancer-fighting protocols and research article links.
Please note that I am just a member and not a representative of LEF, and I do not benefit in any way from guiding you to their website. Also, they ARE a business, so Caveat Emptor!
I wish you many blessings in your search for help. I hope you’ll take advantage of the information that you best believe will help you and yours.
God Bless!
