Activity

  • DebraO became a registered member

  • Gracie007 posted an update in the group The WeHeal Welcome Community

    Interesting article about how COVID vaccine could open doors to cancer treatments.

    From COVID-19 to Cancer, Could mRNA Carry the Answer?

  • PurplePlane posted an update in the group Pancreatic Cancer Advocate Network

    Looking for any thoughts/comments/ideas/feedback on my situation.

    I am currently fighting Pancreatic Cancer; and fully intend to beat this disease! Hence, I wanted to reach out to this community to see if there any thoughts, experience, or guidance that may provide some insight into the next best steps.

    Here’s the situation:
    * Diagnosed—literally by chance—back in April with what I thought was Stage 1b Pancreatic Cancer. I am 53 years old, very active/healthy.
    * The tumor is in the “body” of the Pancreas; and is “contained” to the Pancreas–shows no vascular intrusion, etc.—i.e.; it was resectable at the time of diagnosis.
    * With my Oncologist and Pancreatic Surgeon, we agreed to do neo-adjuvant chemo, then surgery, then adjuvant chemo. We were originally going to do 4 rounds of chemo, surgery, then 8 rounds of chemo; however, given that I was responding so well with the chemo–and after consulting with Dana Farber– we decided to go for 8 rounds of chemo, then surgery, then 4 rounds post surgery. However, after my 6th round, I unfortunately had a reaction to the Oxypalatin; and hence, we agreed to stop at 6 rounds, do the surgery; and then, we’ll do 6 more rounds of chemo. The 6 rounds of chemo that I have completed were as follows: 2 rounds of 100% full regime of Folfirinox, then, 4 rounds of mFolfirinox (slightly reduced Irinotecan and elimination of the 5FU bolus).
    * Progress to date—The tumor itself shrunk by ~35% after the 6 neo-adjuvant treatments; and my C19-9 has consistently trended downwards going from 230 in April to 156 in July.
    * I had a Distal Pancreatectomy in mid August. The surgeon is a “high-volume” Pancreatic Surgeon who did this as a “robotic surgery”; and was able to get a R0 resection. However, the downside was that 2 out of 18 lymph nodes showed cancer–which ultimately means that the cancer was more advanced than initially thought (Stage 2b).
    * I also had an Organoid study done on the tumor, but unfortunately, that didn’t really yield anything useful. I also did the KnowYourTumor process through PanCan; and that, too, didn’t seem to yield anything useful either.
    * I am scheduled to start my adjuvant chemo therapy in the coming weeks; and, at this moment, with some further modifications and precautions, we’re planning to go back to mFolfirinox for 6 sessions.

    Bottom line–That’s the whole picture. I very much want to move beyond this; and have a strong long-term prognosis/cure. I’ve had the R0 resection–which is great–but I’m concerned about the lymph nodes. So, if the community has any thoughts/experiences/insights/suggestions that I should look into, it would be much appreciated.

    Thank you.

    • Eric Drew replied

      Hello PurplePlane and thank you for posting your case to the WeHeal community for thoughts and comment. I commend you on your diligent fight and for being your own advocate, which is crucial to insuring optimal treatment! I would not be here if I did not advocate for myself and ultimately locate the treatment that saved my life 15 years ago. BTW we are about the same age as I will be 52 in less than a week. I personally am not an expert in pancreatic cancer but I have a couple of thoughts. WeHeal has a large network of medical professionals (some pancreatic specialists) that I will contact and request feedback on your treatment history and plan. WeHeal also works with several partners who do free treatment and clinical trial consultations for all WeHeal patients. With your permission, I will submit your case history to them and get their feedback for you. I assume you are located in the Boston area? Are you open to traveling to other destinations if needed? I look forward to helping you achieve your goal of 100% permanent remission, whatever it takes!

      • PurplePlane replied

        Eric,

        Thank you for your comments and follow-up. I would welcome any/all input/insight for consideration; and am open to pretty much anything that will help me to CURE this! On that note, yes, I live in the Northeast; and would be willing to travel as needed to get results. Thank you.

        • Eric Drew replied

          Your are very welcome PurplePlane this is why we are here! I have a few irons in the fire on your behalf. I reached out to a patient i know who just finished treatment and is in remission. Apparently her cancer was quite different in origin so she didn’t have much advice regarding treatment, but she did have this recommendation which I think is a great recommendation for everyone everywhere! She said “Tell him to take one day at a time, and be grateful and enjoy that day as much as possible!”.
          I have also requested a preliminary treatment search for you by our partner Aloha Health. Aloha provides free treatment and clinical trial searches using AI technology. I hope to have something back from them shortly, but you may want to create an account which will let you access that resource indefinitely as you scan for solutions. Let me know if you are interested.
          I also recommend that you order a free treatment and clinical trial consultation with our partner Cancer Commons http://www.CancerCommons.org. Their advocates are excellent and they may flag something that nobody else has yet as a solution you are looking for. Just go tho their site and fill out the short ASK form under the patients tab. In the comments section, you can specify for them to copy eric@wehealorg so I can review and discuss the results with you (if you want).
          There is also one more thing I want you to know about. A company just got FDA approval for a non-toxic cancer treatment which clears the body of tumors and infections and could save the life of any patient dealing with a stage 4 diagnosis. It is a procedure which heats the blood and core temp of the body under anesthesia and keeps the temp high while managing the body’s reactions and keeping everything maintained at a safe level to prevent shock and damage to healthy cells. They safely “cook” cancer cells and infection out the body like a thorough body cleansing! It is the only approved whole body hyperthermia treatment and I witnessed it bringing back cancer patients who were days away from death. Unfortunately it is not covered my medicare yet as it is a brand new procedure, and it is very expensive. However I want everyone to know about this in case their lives or the lives of a loved on are on the line and there are no other options.

          • PurplePlane replied

            Eric,

            Thank you for your follow-up–and ideas.

            Regarding AlohaHealth, I would definitely be willing to sign-up; and see what they have to say; as I’m definitely interested in pursuing some Clinical Trials following my adjuvant chemo–i.e.; I want to continue doing what I can even beyond the traditional treatment cycle to continue to battle this. Bottom line–Please make the introduction to Aloha for me; and I’ll work with them to use their AI technology to assist. Thank you.

            Regarding CancerCommons, I will register with them; and go through their process to see what they may come up with; and will be happy to ask them to copy you for any thoughts/comments.

            Regarding this new FDA approved process, I’m extremely intrigued by this. Fortunately, I have recently had a successful R0 resection; and hence, my main concern at this time is micro-metastasis where a tumor could re-emerge some time later; and hence, my question to you about this procedure is does it work with micro-metastasis, or is it only for Stage IV established tumors? Put another way, if it would work for “any” possible cancer, then I definitely want to look into this further.

            Finally, I made reference to doing two “tumor analyses” in my original description of my situation–i.e.; both the Prethera KnowYourTumor and the SEngine PARIS Tests; and I’ve since received the completed reports of both of them. Interestingly, both of those reports found that my tumor seemed to react to Gemcitabine; and in fact, the Organoid study said that my tumor had “no reaction” to the elements of Folfirinox (they test the elements individually versus in combination)–which is strange. More specifically, the SEngine PARIS test showed that my sample had “no reaction” to the Folfirinox elements; however, I had used Folfirinox for neoadjuvant therapy with decent results—e.g.; tumor shrank ~40% before surgery, and my C19-9 markers decreased steadily from 230 to 156. So, it’s “interesting” that the test showed “no reaction”. Put another way, that seems like a reaction to me, so I’m confused. Again, I’m ready to start my adjuvant chemotherapy following my successful R0 resection; and the current plan is to go with mFolfirinox. Following on this further, my sample showed a response to Gemcitabine—which is great/encouraging—however, any/all the studies you see highlight that Folfirinox shows much better long-term survival rates over Gemcitabine; and hence, it begs the question what should I do with my adjuvant chemo—i.e.; Folfirinox shows better efficacy in most all studies, but my sample shows Gemcitabine potentially having better impact. So, put another way, it seems like a potential quandry—i.e.; go with what is “preferred” showing longer-term survival, or go with what my tumor seems to “react” better to.

            As always, any thoughts/comments/guidance would be appreciated. Thank you.

  • NipperCat posted an update in the group The WeHeal Welcome Community

    Here is the reason why you should never waste any part of an onion, even the onion skins!

    • Gracie007 replied

      I use them when making homemade broths. Learned this from the cancer cookbook.

  • NipperCat posted an update in the group The WeHeal Welcome Community

    Are you aware of how much we are aiding environmental pollution with our discarded metal tooth fillings! WOW!
    (See also — https://iaomt.org/wp-content/uploads/Comprehensive-Review-Dental-Mercury.pdf)

  • NipperCat posted an update in the group The WeHeal Welcome Community

    Be good to yourself and stop eating all that sugar! Attention: sugar derivatives and polysaccharides (e.g., maltodextrin) are in sugar substitutes, some vital pills, and many other foods. Read all labels carefully be fore buying anything. Fresh fruit and veggies are the way to eat well!