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  • husband11
    husband11 Member Posts: 1,287

    I read another article that said research stopped on Paw Paw because obtaining the plant in sufficient quantity was proving to be too difficult, and also that it lacked solubility. The article on the cases studies says they used a 95% ethanol extract. It seemed to work for a number of people, so I am not sure where the problem with solubility comes from.

  • santabarbarian
    santabarbarian Member Posts: 2,311

    snooky, interesting. here is one in response to yours:

    https://neurohacker.com/mitochondria-exploring-5-lifestyle-habits-to-benefit-cell-health


  • nicolerod
    nicolerod Member Posts: 2,877

    Husband lots taking that on Janes protocol


  • snooky1954
    snooky1954 Member Posts: 850

    Are you sure that it's paw paw and not soursop? (Gravolia) They are very similar fruits. One of the big drug companies knew that soursop worked on cancer. They spent 7 yrs trying to isolate the ingredient to make a drug. They couldn't ( my dau-in-law is from the Philippines. She said they boil the leaves of soursop for nearly every condition they have. Her family has a tree in the back yard. She talks about it like it's a wonder drug.


    Hope this link works it's an amazing story.

    https://www.msn.com/en-gb/news/uknews/is-this-brit...

    If this is true ALL of us have a chance.

  • snooky1954
    snooky1954 Member Posts: 850

    https://www.organicfacts.net/health-benefits/fruit...soursop.html

    aha. Just read soursop is an anti parasite too.

  • bsandra
    bsandra Member Posts: 1,031

    Dear All, I did not write for some time but we are quite well here. Ultrasound on the 8th of January showed no signs of disease anywhere, nothing is even mentioned for the first time in two years about liver fibrosis (what a funny thing - the difference to what we did before was we added Metformin, 250 mg/d, could it be the reason?). Sandra is just after her last immunotherapy (5 mln. anti-HER2 dendritic cells, 8th shot), recovering from low blood counts but overall in great moods and health.

    Regarding FZ: as before I think FZ works in combination with something. Joe's story says it is CBD, VitE, Curcumin and... most probably Pembrolizumab, an immune modulating MAB. Joe is making analysis which will last, and for patterns starting to emerge, to get the clearer picture, you need a lot of data, i.e. a lot of people. We'll see where that brings us.

    Regarding immunotherapies: as everyone knows, new T-Cells have been found that can become very important very soon. In fact, it is long known to scientists (www.sciencebasedmedicine.com) that ~20 % of detected small breast-cancer tumors that allow the tactics "wait and see", regress, means immune system fixes everything. With the last discoveries, scientific community thinks there can be people who are completely "immune" to cancers. That would be a beautiful discovery that could be transferred to other people. As for now, I think DC+CIK therapy (we used it, and we are not disappointed at least up till now) is the first step, a cheap enough affordable option. So... cancer research future is bright, let's just hope we'll be still able to "eat its fruit".

    Warmest hugs to everyone, Saulius

  • BevJen
    BevJen Member Posts: 2,341

    Saulius,

    Is dendritic cell therapy used in Lithuania? I was interested in reading that that's what your wife has been doing. I had researched some trials using dendritic cell therapy, but if I remember correctly, these were trials and not taking anyone else on at this time. Just curious about the process to get your wife this therapy. Like you, I think it holds great promise.

    Thanks for any information you can provide.

    Bev

  • bsandra
    bsandra Member Posts: 1,031

    Dear BevJen, I don't want to "pollute" this thread with the other topic, so I will write you a PM, okay? Nothing to hide, simply don't want to start this big topic here... Saulius

  • nicolerod
    nicolerod Member Posts: 2,877

    Hi Saulius soooooo HAPPY for you and your wife!!!!!!

  • simone60
    simone60 Member Posts: 952

    Saulius,

    That's great news! I hope you two did some celebrating.

  • husband11
    husband11 Member Posts: 1,287

    Yes, congratulations Saulius!!

    Can you elaborate on how you got DC+CIK treatment?

  • JFL
    JFL Member Posts: 1,373

    Congrats, Saulius, on your wife's can results! Wonderful news.

    I hope your wife can find something to get her hemoglobin in check. I found a combo of ashwagandha and low-dose vegetable iron supplements to salvage my hemoglobin levels from a very low place requiring a blood transfusion. I would prefer not to have to take any iron supplements but I was in a place where I was about to be unable to tolerate any of the chemo treatment options I have left. I wish my MO had mentioned iron earlier in the game as I assumed it wouldn't help with chemo-induced anemia/low hemoglobin (caused by Doxil, initially). Had I started iron supplements sooner, I would have tried to stay on Doxil a bit longer, at least 3 more months to see what the next PET scan said. I ran out of the iron supplements recently and stopped taking them for about 10 days and started to notice the fatigue and cloudy thinking of low hemoglobin were coming back.

    However, like Frisky said, not everyone's low hemoglobin may improve with iron. Frisky, I hope you can find something that works for you as well and that you can avoid a transfusion. Although, I must say, I immediately felt better after the transfusion. It is like the electricity was plugged back in.

    Soursop - good to know it is good for cancer (and many other things). Where I live, it is referred to as "guanabana", its name used in Latin American countries. There are local farmer's markets at indoor and outdoor malls on the weekend where I live and they all have guanabana smoothies, made fresh right in front of you. Also, many of the ice cream or gelato shops have guanabana flavored ice cream. The ice cream may not contain enough of the fruit to do any good but at least it will make me feel a bit better next time I order it! Winking

  • bsandra
    bsandra Member Posts: 1,031

    Thank you guys for all the best wishes. Ehm... we did not celebrate, somehow we are too cautious to celebrate, as if scared to spoil something:/ Husband11, I'll PM you. Hugs to everyone, you beautiful people, Saulius

  • husband11
    husband11 Member Posts: 1,287

    My wife is going in for another blood transfusion today. Her hemoglobin has dropped once again to a dangerous level, high 60's. She has been taking polysaccharide iron supplement daily, and we are also eating liver 2 or 3 times a week. The cause of the drop is unknown. They are doing more extensive blood tests to gain some insight into what is happening. Her tumor markers dropped, her platelets and neutrophils rose, yet her hemoglobin and RBC count continues to fall. I went over her blood tests last night, and it seems late November there was a sudden drop in her ferritin, hemoglobin and RBC count. And that's about it for change. Some of her blood components (not liver values) jumped at that point, perhaps signalling an infection. Ever since then her rbc and hemoglobin has been falling. It could a be a loss of blood, hemolysis of blood (due to immune factors such as infection like influenza A), or problem with production of blood. Hopefully a good hematologist will be looking at the results and giving an opinion. I doubt the oncologist has the experience to sort this out, and has the wisdom to seek out an outside opinion. As well, in early February she will be getting a colonoscopy and endoscopy to look for bleeding. Although we were out of the country on holidays for two weeks, she was really sick with the flu (we think) for the first week. She hardly ate. Second week she got better, now that she is at home she is nearly fully recovered and eating well again. It would be great if this was just a symptom of a viral infection.

  • Frisky
    Frisky Member Posts: 1,686

    Husband I'm so sorry to read about the continuing problem with the falling hemoglobin levels. I can sympathize because I'm suffering from the same problem.

    the only difference is that I know chemotherapy is responsible for my increasing weakness and diminishing quality of life. I'm convinced that treatments are killing me a lot faster than the cancer, but I'm too chicken right now to consider anything else.

    Saulius congratulations on your wife recent success. I was under the impression she was already NED....

    it will be helpful to everyone to know what type of successful therapy your wife has undergone and where. Success stories are so rare, it will lift our spirit knowing there’s a small light at the end of that long, dark, and abysmal tunnel.

    Don’t hesitate and worry about the topic of this thread, we have been discussing everything under the sun from day one. Thank you.

  • husband11
    husband11 Member Posts: 1,287

    I am sorry to hear that you are suffering from the same problem Frisky. Do you think its the xeloda that is doing it?

  • Frisky
    Frisky Member Posts: 1,686

    Husband, I can't update my profile. I stopped taking xeloda a year ago. I have since been on doxil and now Navelbine...except for femara—5 years ago—I deem all the other txs to have been useless and mostly damaging.

    After all is said and done, I'm afraid you'll find out, that the current treatment is the cause of your wife's problem. Normally, problems with the digestive system have many unmistakable symptoms, but I'm not doctor...just my intuition....whatever the cause I hope you find a solution.

    My hemoglobin is at 8 and I feel like a zombie, I can imagine what's like at 6...what's amazing to me is that our caregivers have no solution to the major problems these medications create.

    I have not even started studying everything that can go wrong with blood transfusions...how many terrible diseases we can acquire...

    Ps: I think I figured out how to update my profile

  • husband11
    husband11 Member Posts: 1,287

    Undoubtedly blood transfusions are not desirable. I had a friend die from too many transfusions. Or at least that is what his family told me.

    Yes, I agree, the Oncologists are poor at dealing with side effects. You really have to seek out your own solutions, and or have a good primary care physician. The oncologist didn't even recognize my wife had a problem with her hemoglobin until she went to her personal doctor and got another blood test. They just brush it off until it becomes obvious, then sometimes over react. My wife's ascites had abated, and then all of a sudden her liver specialist wanted to put a shunt through her liver. Told her she would die if she didn't get it. He was way behind the situation. Probably fear of liability after we made a complaint to the hospital about how they completely missed her ascites altogether. Told her she had gas.

  • nicolerod
    nicolerod Member Posts: 2,877

    Husband I am so sorry your wife is not feeling well and this hemoglobin is being an issue. I will pray the doctors can get to the root cause.

    Is Hemoglobin on blood work listed as Hgb???? If So I am 13.9 so I cannot imagine how your wife and frisky feel right now being at 6 and 8. :(

  • husband11
    husband11 Member Posts: 1,287

    Yes, that's it, listed as Hgb. I read normal is 12-15.5 by doing an online search.

  • husband11
    husband11 Member Posts: 1,287

    Perhaps Ashwagandha as JFL mentioned might help with low RBC and Hgb? - https://www.ncbi.nlm.nih.gov/pubmed/8866726

    Inhibits breast cancer - https://www.ncbi.nlm.nih.gov/pubmed/31731424

    No enzyme interactions with Cyp2d6 or Cyp3a4 - https://www.ncbi.nlm.nih.gov/pubmed/25684704

    Improved cardiovascular endurance in humans - https://www.ncbi.nlm.nih.gov/pubmed/26730141

    Tested on human cancer patients to ameliorate symptoms of cancer treatment, in particular fatigue - https://www.ncbi.nlm.nih.gov/pubmed/23142798


  • santabarbarian
    santabarbarian Member Posts: 2,311

    also I think chlorophyll can be really good for hemoglobin. You can buy a tincture that is flavored w mint and put some drops in a glass of water. I used it when low many years ago when pregnant.

  • bsandra
    bsandra Member Posts: 1,031

    I am so sorry for those who suffer with side effects of treatments. My heart goes out to you all. I know, maybe not everyone will like this, but two things were very powerful for people I know to fix their blood: 1. CBD (25-150 mg/day) 2. Honey-cognac-cranbery (1:1:1 in grams) mixture (one spoon a day).

    Dear Frisky, yes, Sandra is NED, but last year at this time she had local relapse (most probably inflammatory - very scary) in her same breast. Then after 6 rounds of chemotherapy (after previous 12 rounds), she had mastectomy and radiation, and she is NED again. That message was just to tell that after last ultrasound everything seems good. I think you can find our story on page 65 of this thread, and treatments that we have done are in the signature.

    I think... not us but you guys are true inspiration and example. We have just started this scary journey (32 months now), and most of you are fighting for so long. We with my wife have found so much drug-related information, wisdom and compassion on this thread that we will be forever thankful. Hugs and till very soon,

    Saulius

  • goldie0827
    goldie0827 Member Posts: 6,835

    Saulius, so happy to hear the good news for Sandra.

    On the other hand Husband, I'm sorry to hear of your wifes issues and needing the transfusion.

  • husband11
    husband11 Member Posts: 1,287

    Current theory by the doc's is that my wife has some sort of bleed. Unfortunately we have to wait 2 weeks until she can get an endoscopy of her trachea and bowels. I wonder if you can bleed internally, ie, into the body cavity?

  • goldie0827
    goldie0827 Member Posts: 6,835

    Husband, I sure hope there is no internal bleeding, that would not be good. You would think they would get her in right away for those procedures. Hoping the wait doesn't create more problems. Hugs to the both of you.

  • nicolerod
    nicolerod Member Posts: 2,877

    Husband ..I am.praying for you wife and you !!

  • husband11
    husband11 Member Posts: 1,287

    Thank you all for the kind words. She goes in today for a blood test to see how her levels are, having had a transfusion a couple of days ago. She keeps calling the office that does the internal scoping, hoping to get in early on a cancellation. That often works if you are persistent.

    There is a slight possibility that this is related to some sort of flu, as I read that Influenza A can cause low RBC and Hgb. She was sick with the flu, so its possible. Hoping.

  • snooky1954
    snooky1954 Member Posts: 850

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  • nicolerod
    nicolerod Member Posts: 2,877

    Husband any word on the blood results??

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