Urachal Cancer Survivor

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RE: Checking in

by vtoole on Thu Jul 07, 2016 04:14 PM

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Hello All! So good to see so many of you back on here. I, too, was thinking of this blog and that I had not seen a Cancer Compass message pop up on my email for quite some time now. Julesbgreen...so happy to hear of your recent travels...and your treatment. Would be willing to you share more info as to where your cancer had spread and what prompted the FOLFIRI treatment? As some of you may recall, my husband has been battling this rare cancer for 6 1/2 years now (initially diagnosed in December 2009). Last spring (2015), he began a Targeted Therapy (BVD523) at MDA for one gene mutation. By September 2015, however, the cancer had spread to his brain. He had gamma knife brain surgery (radiation) and, even though they usually are only willing to give that a go with 4 or less tumors (my husband had 7), it was successful. All 7 brain tumors resolved and he began another Targeted Therapy (these are all experimental) -BMN673 for yet another different gene abberation in November 2015. This new trial drug ( a PARP inhibitor) was very successful for the first 2 months and all tumors/cancer receded by 35%. The doctor at MDA was very excited, and called it a "partial remission," although that was short lived- as are so many of these targeted therapies. By May of 2016, the trend was going in the opposite direction and another tumor had formed in his lungs (he had a new one show up and now had 3 lung tumors). He is now on his 3rd targeted therapy trial in Dallas (our home town) - a combination of Mocetinostat (an HDAC inhibitor) and Durvulomab (an immunotherapy drug). In about another 5 weeks, CT's will be done to see what the status is at that time. A lot has taken place in a year's time. We have both just retired and are heading back home - as I type - after a 2 week total r and r vacation at our dear friends' lake house in Georgia, outside of Atlanta. We are hoping to take a trip to Florida soon to visit family and are also planning a trip to Santa Barbara, Ca. in September. Hoping all continues to go well until the fall. It is so good to hear from those of you who have been posting. My thoughts and heartfelt support goes out to all of you. This is a difficult journey none of us would pr for to be on. Peace, Vivian

RE: Checking in

by xantherea on Fri Jul 08, 2016 12:42 AM

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On Jul 07, 2016 11:07 AM tkkc4421 wrote:

The total cost was about $33000.00 AUD , plus our accommodation etc , we are here for a month. And have then the oppotunity between treatments to see some of the surrounding country . There whole treatment revolves around the fact that cancer hides in your body by various means , and the work first on breaking down those defence s and then using you own body's Natural Killer cells to attack the cancer . If you Google Dr Hiroshi Terunuma you will find a lot of information on this treatment which he has Benin involved in since the early 90s His email is , he responds well to emails , if I can help with anything else please let me know . This is a battle that requires lots of information , that is not always easy to get . Best wishes Troy

Many thanks for your email, Troy. I, too, am a fellow Australian, but I am located in Sydney.

I am googling Dr Hiroshi Terunuma as I read not so long ago about using your own body to attack the cancer. I am very interested and keen to get my father to Japan. Unfortunately, the email address you posted wasn't visible (this site doesn't like to publish email addresses). Can you confirm the email address in words? Is it aiet at nichimail dot jp?? 

Have you already started the treatment?

Thank you so much for sharing your treatment, it gives us some hope.. I would be keen to hear how you go over the next month, so please keep posting if you can or you can private message me your phone number and I will happily call you!

I will need to make contact with Dr Hiroshi first, to see if he has had some success with PMP or appendix cancer.

RE: Checking in

by xantherea on Fri Jul 08, 2016 12:44 AM

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On Jul 07, 2016 11:07 AM tkkc4421 wrote:

The total cost was about $33000.00 AUD , plus our accommodation etc , we are here for a month. And have then the oppotunity between treatments to see some of the surrounding country . There whole treatment revolves around the fact that cancer hides in your body by various means , and the work first on breaking down those defence s and then using you own body's Natural Killer cells to attack the cancer . If you Google Dr Hiroshi Terunuma you will find a lot of information on this treatment which he has Benin involved in since the early 90s His email is , he responds well to emails , if I can help with anything else please let me know . This is a battle that requires lots of information , that is not always easy to get . Best wishes Troy

Many thanks for your email, Troy. I, too, am a fellow Australian, but I am located in Sydney.

I am googling Dr Hiroshi Terunuma as I read not so long ago about using your own body to attack the cancer. I am very interested and keen to get my father to Japan. Unfortunately, the email address you posted wasn't visible (this site doesn't like to publish email addresses). Can you confirm the email address in words? Is it aiet at nichimail dot jp?? 

Have you already started the treatment?

Thank you so much for sharing your treatment, it gives us some hope.. I would be keen to hear how you go over the next month, so please keep posting if you can or you can private message me your phone number and I will happily call you!

I will need to make contact with Dr Hiroshi first, to see if he has had some success with PMP or appendix cancer.

RE: Checking in

by tkkc4421 on Sat Jul 16, 2016 12:43 AM

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I am now half way through my treatment here in Tokyo and apart from a few days of high temps (which Dr said was just a good immune system response ) feeling guide good . I was surprised to find some many other patients from Australia and other countries here , people that have exhausted there options at home , done there research and found that immunotherapy may help them . When your not at the clinic the DR encourages you to go out enjoy your self , have fun he says , make you feel good and not just focused on the cancer . What ever the end result may be I am have we come to Tokyo .

RE: Checking in

by julesgreenb on Sat Jul 16, 2016 02:12 AM

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On Jul 16, 2016 12:43 AM tkkc4421 wrote:

I am now half way through my treatment here in Tokyo and apart from a few days of high temps (which Dr said was just a good immune system response ) feeling guide good . I was surprised to find some many other patients from Australia and other countries here , people that have exhausted there options at home , done there research and found that immunotherapy may help them . When your not at the clinic the DR encourages you to go out enjoy your self , have fun he says , make you feel good and not just focused on the cancer . What ever the end result may be I am have we come to Tokyo .
Thanks for sharing your Tokyo experience. Please keep it up. I hope it works but it's great that you are making the most of the experience regardless. It's so important! All the best, Julia

RE: Checking in

by julesgreenb on Sat Jul 16, 2016 02:43 AM

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On Jul 07, 2016 3:55 PM vtoole wrote:

Hello All! So good to see so many of you back on here. I, too, was thinking of this blog and that I had not seen a Cancer Compass message pop up on my email for quite some time now. Julesbgreen...so happy to hear of your recent travels...and your treatment. Would be willing to you share more info as to where your cancer had spread and what prompted the FOLFIRI treatment? As some of you may recall, my husband has been battling this rare cancer for 6 1/2 years now (initially diagnosed in December 2009). Last spring (2015), he began a Targeted Therapy (BVD523) at MDA for one gene mutation. By September 2015, however, the cancer had spread to his brain. He had gamma knife brain surgery (radiation) and, even though they usually are only willing to give that a go with 4 or less tumors (my husband had 7), it was successful. All 7 brain tumors resolved and he began another Targeted Therapy (these are all experimental) -BMN673 for yet another different gene abberation in November 2015. This new trial drug ( a PARP inhibitor) was very successful for the first 2 months and all tumors/cancer receded by 35%. The doctor at MDA was very excited, and called it a "partial remission," although that was short lived- as are so many of these targeted therapies. By May of 2016, the trend was going in the opposite direction and another tumor had formed in his lungs (he had a new one show up and now had 3 lung tumors). He is now on his 3rd targeted therapy trial in Dallas (our home town) - a combination of Mocetinostat (an HDAC inhibitor) and Durvulomab (an immunotherapy drug). In about another 5 weeks, CT's will be done to see what the status is at that time. A lot has taken place in a year's time. We have both just retired and are heading back home - as I type - after a 2 week total r and r vacation at our dear friends' lake house in Georgia, outside of Atlanta. We are hoping to take a trip to Florida soon to visit family and are also planning a trip to Santa Barbara, Ca. in September. Hoping all continues to go well until the fall. It is so good to hear from those of you who have been posting. My thoughts and heartfelt support goes out to all of you. This is a difficult journey none of us would pr for to be on. Peace, Vivian
Hi Vivian, Your journey continues to amaze me. I don't know if I could go through everything your husband has and be as well as he seems to be. How does he tolerate it? I always suffer so much, although in Februrary radiation completely cured months of excrutiating pain caused by enlarged abdominal nodes pressing on nerves in my back and squeezing my ureter closed. I also had to have a nephrostomy on my left kidney. To answer your question, in addition to the abdominal nodes, the cancer has spread to my lungs, liver, spine and neck. After six rounds of FOLFIRI the tumours shrunk about 30% or so, but as you say, sometimes these positive outcomes are short lived, Now after eight rounds I'm getting a break and having another ct scan next week. One reason we stopped is after my last round I fainted one night and fell quite badly hurting my back and then fainted again when my partner tried to move me to the bed. So in addition to the chest, abdomen, pelvis ct scan I'm having a head and back MRI. I hope the cancer hasn't moved into my brain but I was very encouraged to read about how successful your husband's radiation treatment was and if, lord help me, this is my fate then it gives me something to ask about especially since we know that my cancer has responded well to radiation before. What symptoms did he have. How did you discover the brain tumours? My oncologist is thinking about more phase one clinical trials for me but the one I did last winter was sheer hell for me and didn't work. I really need to have more gene testing done. The oncologist in Cuba I connected with about their immunotherapy treatments asked that I get a couple of specific gene tests done on my tumour tissue while I was doing chemo. That's my next move. Please do keep in touch!! Big big hugs, Julia

HEALTHYSELF.HELP

by Greygay on Mon Jul 18, 2016 12:43 PM

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Dear Fellow Urachal Cancer Campers,

I have put all of my Complimentary / Integrative Cancer research on the website below to make it readily available for free to all. Best to start with my “Holistic Healing Hotsheet."

HEALTHYSELF.HELP

Integrative Medicine and Integrative Oncology are two of the fastest growing fields in Medicine. So, in addition to seeking out the best in conventional Cancer Care, my advice is to also add a kind, intelligent, and resourceful ND to your team.

I found Lise Alschuler, ND's book "The Definitive Guide To Cancer" (c) 2014 to be particularly useful, and so made an appointment with her at Naturopathic Specialists in Scottsdale, Arizona in June and found her in-person consult to be one of the best I’ve had so far.

In the spring of 2015, i attended a great workshop in San Mateo with Dr. Kelley A. Turner, Author of "Radical Remission" (c) 2015. She does not give many workshops, but her book, along with Alschuler's Guide and David Servin-Shreiber's "Anti-Cancer" (c) 2009, is essential reading for all who want to try to beat this disease for as long as they can.

A special note on Medical Cannabis (for states where it is legal): Medical Cannabis has amazing palliative effects: CBD is excellent to control anxiety during the day, and THC will help you sleep soundly all night, increase your natural melatonin production (which is anti-cancer), and reduce your dependence on opioid pain relievers - or enhance their affect. Additionally, emerging research is showing that Cannabis is anti-Cancer in a myriad of ways - THC seems to slow down the growth of tumors, CBD seems to slow down metastasis.

Medicinal Mushrooms - Coriolus Versicolor (PSK or PSP), Maitake (Gold or D-Fraction), Agaricus, Reishi, and AHCC (a form of Shiitake) - are among the most prescribed natural medicines for Cancer patients in Japan and seem to inhibit a broad spectrum of Cancers.

Mistletoe/Iscador is the most prescribed natural medicine for Cancer patients in Europe and, while it doesn’t cure Cancer, it seems to inhibit its growth and help improve quality of life.

My research on, and own personal experience with, Intravenous and Liposomal Vitamin C has shown that this is not an effective therapy for Colorectal Cancer (Urachal Cancer's closest analog) - unless your tumors have KRAS or BRAF mutations, in which case, it may work quite well. The biggest collection of articles on Vitamin C can be found in “The Orthomelucal Treatment of Chronic Disease” by Andrew Saul © 2014.

Other important supplements, perhaps just as or more important, for Colorectal Cancer (Urachal Cancer's closest analog) include: Modified Citrus Pectin, Fermented Wheat Germ Extract, Biovailable Curcumin, Boswellia with AKBA, Omega-3, Quercetin, Resveratrol, Co-Enzyme Q10, Probiotics, Vitamin D3, Vitamin E Succinate &/or Tocotrienols, Selenium, Alpha-Lipoic Acid, Sulforaphane (from Broccoli and Broccoli shoots), Green Tea, Milk Thistle, Fucoidan, and Astragalus.

Alternative and Naturopathic Medicine clinics, like the Issels Clinic in Santa Barbara, have been using non-FDA approved Immunotherapy treatments for years, and now Immune Checkpoint Inhibitors have been granted “Breakthrough" status by the FDA and Cancer Vaccines are in Clinical Trials.

Immune Checkpoint Inhibitors - which are extending lives significantly longer than Chemotherapy with fewer side effects - seem to work better so far on Colorectal Cancer (Urachal Cancer's closest analog) tumors that have MSI (Microsatellite Instability) / DNA MMR (DNA Mismatch Repair).

Wise men and women over the centuries have advised that the best way to get through any health crisis is to treat your body, mind, and soul like a temple ~ Breathe deeply in and out, drink lots of pure water, eat a variety of whole foods (fresh, organic, seasonal, vegan/vegetarian), get good sleep (retire at sunset, rise at sunrise), spend time outside in nature, relax (sip tea, read, meditate, spend time with your friends and animal companions), get regular exercise (walk, Qi gong, Yoga, trampoline, clean house, light resistance training), take control of your healthcare, follow your bliss, give and receive your love, keep your sense of purpose, laugh - because laughter is the best medicine, and row row row your boat gently down the stream…

Cheers :)

Grey
(aka Greygay aka Greydiation)
Quintuple Cancer: Sun, Moon, Mars, Mercury, and Urachus!

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On-topic replies to this post which discuss successful experiences with Holistic Healing, Integrative Oncology, Alternative Cancer Clinics, and emerging Immunotherapies, like Immune Checkpoint Inhibitors and Cancer Vaccines, would be most appreciated.

End Of Life Options / Death with Dignity / Physician Assisted Suicide

by Greygay on Mon Jul 18, 2016 01:48 PM

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Dear Unhappy Urachal Cancer Campers,

I have a different, less desperate, perspective on this disease and what to do about it, when the time comes, that i thought i'd share with all of you.

Of course we all want to enjoy this thing called life for as long as we can. 

But when you find yourself on the losing end of this disease (as most of us eventually will), and the suffering has become unbearable to you, or is outweighing the benefits of surviving, or you are simply tired of licking your wounds, or being a burden on your loved ones (who will of course gladly bear that burden) - or even find it absurdly self-indulgent to spend so much money trying to keep yourself alive for a few months longer (enriching the deep pockets of doctors, hospitals, and pharmaceutical companies) while so many around the world could use those same resources to live for many years...

One option, and possible source of comfort to you, that your Oncologist(s) might not mention (or legally be able to mention to you), is: Death With Dignity / Physician Assisted Suicide.

You can get off the surgery-radiation-chemotherapy rollercoaster anytime you want now without having to pay thousands of dollars to Dignitas in Switzerland (unless of course you want to go out in high style, drinking hot cocoa surrounded by beautiful mountains and lakes...)

Death With Dignity / Physician Assisted Suicide is now legal in California, Oregon, Washington, and Vermont.

Learn more about it and access your option here: 
www.deathwithdignity.org /learn/access/

~

The indigenous peoples of this land, who crossed over from The East, and lived in harmony with the rhythms of nature for over 10,000 years before us, awoke with the sun, went to bed with the moon, and had dream catchers but did not dream of trying to live forever...

The Tao Te Ching ("The Way of Virtue"), written 2500 years ago by Lao Tzu ("Old Master"), the founder of Taoism, is a long poem about clearing your mind, being grateful for what you have, and letting go… My favorite translation is by Jonathan Star.

Rest in Peace :)

Grey
(aka Greygay aka Greydiation)
Quintuple Cancer: Sun, Moon, Mars, Mercury, and Urachus!

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On-topic replies to this post which discuss End of Life Options / Death with Dignity / Physician Assisted Suicide would be most appreciated.

 

RE: End Of Life Options / Death with Dignity / Physician Assisted Suicide

by pallizzie on Mon Jul 18, 2016 02:04 PM

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I resent this article - the reason why we are hear is to learn of how to cope with this disease and to help eachother. Suicide is not the answer. You will not get to Heaven by taking your life. You learn to deal with things and accept that this is what the Lord has chosen for me. Maybe I can help others on the way. I try to keep upbeat and positive but the first time I read this I was depressed the rest of the day. Now I see you have posted it again. please don't continue to put this on this site. It doesn't belong here.

RE: End Of Life Options / Death with Dignity / Physician Assisted Suicide

by Supergramma1965 on Mon Jul 18, 2016 02:45 PM

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Agreed.
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