Cancer Across the Pond, Con't
Hey Ladies, I am home again after my 7th trip to Germany in 7 months (one more to go, then break for awhile, probably til the end of the year). While I was there, they completed the 4th chemoembolization of a 4 treatment plan (once a month for four months), and then two days later went in and did laser ablation on the largest liver tumor. It is now history. I go back on Aug. 5th, and on the 10th, they will do the last laser ablation on the remaining tumor and then the liver will be clear. They did a CT and MRI while I was in the hospital in Frankfurt and there was nothing new, and the lymph nodes that are slightly enlarged have not changed substantially. They say I will be ready for a break at that point !! I am so grateful there are almost no words. They will send me home with a treatment plan that will probably inclulde mistletoe injections, Tamoxifen (I am off the charts estrogen positive), and monthly blood work that they will want me to have done. I will also continue to work with my naturopathic oncologist here in the US.
I know there are no guarantees in this world, and I get up each day and just try to get through that day the very best I can, but considering that my US oncologist gave me a year to live "with or without chemo", I'm feeling like I have a guardian angel who is working overtime!
My journey has definitely been an adventure through the world of integrative medicine (in Germany conventional and alternative treatments are used together very routinely) and my faith in the the level of influence you have on your own health and well being through diet, lifestyle, and mind/body work has grown a thousandfold. Never, ever give up hope! Love you all, Hugs! - Helen
Comments
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Thanks for checking in, Helen
Thanks for checking in, Helen! I've been wondering how you're doing and am thrilled to hear of your progress in killing off those unwelcome guests on your liver. In my mid's eye you have a pith helmet and an elephant gun, and are blasting away at the tumors. I hear them scream and shrivel and die while you say take THAT, sucker! Apparently I watched too many cartoons as a child, but you get the idea...I see you strong, well supplied and winning this one. Congratulations !
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I agree with, derMaus - SO
I agree with, derMaus - SO good to hear from you, Helen!
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Welcome home Helen! So glad
Welcome home Helen! So glad to hear from you and the positive news you brought back. I think of you and Chris often and pray for complete remission for both of you. Your message is a great one for all of us fighting this terrible disease.
Love and Hugs,
Cindi
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I have a few questions regarding embolization
Hello there--we are looking at the possibility of radioembolization to get at a few metastatic liver tumors--the primary cancer has been uterine carcinosarcoma. I'm curious--and seem to have missed the beginning of your story--did you consider radioembolization, and how did you end up with chemo embolization--and how did you end up in Germany--were folks in the US unable to handle the procedure? Any detail you can offer would be so helpful! Havent been able to find much about embolization with primary uterine cancers. Thank you and hope you are still doing fantastically well! Suzanne
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some input...Shcolwell said:I have a few questions regarding embolization
Hello there--we are looking at the possibility of radioembolization to get at a few metastatic liver tumors--the primary cancer has been uterine carcinosarcoma. I'm curious--and seem to have missed the beginning of your story--did you consider radioembolization, and how did you end up with chemo embolization--and how did you end up in Germany--were folks in the US unable to handle the procedure? Any detail you can offer would be so helpful! Havent been able to find much about embolization with primary uterine cancers. Thank you and hope you are still doing fantastically well! Suzanne
I'm not sure what radio emolization is? I had transarterial chemoembolization (which is the only kind of embolization I am aware of...), and ablation-both laser ablation and microwave ablation. There are three types of ablation..radiofrequency ablation, microwave ablation, and laser ablation. RFW ablation is by far the most common, but the type chosen depends on the size and location of the tumor because each type has pros and cons. Chemoembolization is often employed to shrink the tumor to a size that fits within the parameters of ablation. That was what they did with me. It is used primarily for liver/lung tumors, but can be used in other circumstances as well. Kaiser did not offer it to me initially because I was over 65, on Meicare, and Stage IV with involvement in my lymph nodes as well. They have a risk/reward filter. I actually didn't find out about it until I returned from Germany. I have a new oncologist in the US now who is much more proactive and very open minded. I am currently doing low dose Tamoxifen, mistletoe injections, Vit C infusions weekly, cannibis daily, metformin (I am diabetic), and more supplements than I want to think about. Also walk daily and try to eat very carefully and organic, but no longer try to follow diets strictly. I have not found that any of them particularly impact the cancer, so I focus of eating to keep my diabetes in control I am scheduled for all new scans in October. Always a little scary. Good luck to you and feel free to contact me whenever, but it's better to send me an email through the Board instead of the discussion board because I don't check in that often, but the emails will show up on my phone/ipad and I try to respond right away. Good luck to you!! Hugs! - Helen
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Questiondaylady said:some input...
I'm not sure what radio emolization is? I had transarterial chemoembolization (which is the only kind of embolization I am aware of...), and ablation-both laser ablation and microwave ablation. There are three types of ablation..radiofrequency ablation, microwave ablation, and laser ablation. RFW ablation is by far the most common, but the type chosen depends on the size and location of the tumor because each type has pros and cons. Chemoembolization is often employed to shrink the tumor to a size that fits within the parameters of ablation. That was what they did with me. It is used primarily for liver/lung tumors, but can be used in other circumstances as well. Kaiser did not offer it to me initially because I was over 65, on Meicare, and Stage IV with involvement in my lymph nodes as well. They have a risk/reward filter. I actually didn't find out about it until I returned from Germany. I have a new oncologist in the US now who is much more proactive and very open minded. I am currently doing low dose Tamoxifen, mistletoe injections, Vit C infusions weekly, cannibis daily, metformin (I am diabetic), and more supplements than I want to think about. Also walk daily and try to eat very carefully and organic, but no longer try to follow diets strictly. I have not found that any of them particularly impact the cancer, so I focus of eating to keep my diabetes in control I am scheduled for all new scans in October. Always a little scary. Good luck to you and feel free to contact me whenever, but it's better to send me an email through the Board instead of the discussion board because I don't check in that often, but the emails will show up on my phone/ipad and I try to respond right away. Good luck to you!! Hugs! - Helen
Daylady,
I don't know if I ever asked you but have you been checked for Ferritin levels? The liver stores iron- iron is a key driver
of cancer and women in menopause are at risk of high iron levels.I had mets to my liver and had very high iron levels.
Takingcontrol58
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Takingcontrol58, I saw your question for Daylady about the ferritin levels. I also had extremely high ferritin levels (in the 900's) which were found 3 months after I'd completed my chemotherapy in 2010. I was tested because I was still feeling short of breath in spite of having had a transfusion to bring up my hemoglobin levels. I had an MRI to see if iron had built up in any of my organs, but I was lucky, it hadn't. I had a liver cyst which has since remained stable. I had phlebotomies back then to bring my ferritin levels down to the normal range (below 150). I was diagnosed with hemochromatosis, but not the most common form of it which involves C282Y genetic defects. Instead, I was found to have an H63D genetic defect, which sometimes causes ferritin to build up in the body and sometimes doesn't. I started reading up on it and found that vitamin C can cause the body to store excess ferritin. I had been taking lots of vitamin C thinking it was an anti-oxidant and would save me from getting diseases like cancer. I have to wonder if it's one of the things that caused my cancer. Last year, I craved and snacked on a lot of oranges. My ferritin level went up again, and at my last test, was found to be just below 150. I have to wonder, again, if the vitamin C caused my cancer to come back and wrap itself around my ascending colon. I'd had a very small mass back in 2014, which didn't grow, so my GYN/onc decided it couldn't be cancer. My CA-125's started going up very slowly last year but remained in the normal range when I was tested in Feb. of this year. My UPSC then grew very rapidly from Feb. to April, when I had my surgery. i know increased ferritin levels can cause some abdominal cancers, like liver cancer, but I haven't been able to determine if it might cause cancer to spread to the peritoneum, paracolic gutter, and the outside of the ascending colon, where mine was found.
I've heard that hemochromatosis is much more common than people realize, affecting about 3% of the population, if I remember correctly. It may even be a little higher percentage than that. It's worth looking into, especially when supplementing with vitamin C.
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Ferritin levels
Pinky,
High iron levels can cause all cancer. It is amazing how we have never been told this information.
I personally believe there is a reason we get cancer. There are many articles on iron and cancer
at the NIH website, pubmed.gov. Iron creates free radicals in our body. That's why we need antioxidants,
to fight the free radicals. Remember, cancer is systemic. Iron is not tied to one type of cancer. Iron is
used in every cell of our body.I believe my cancer was a Grade 3, extremely fast growing, because of my stored high ferritin levels All cancer
cells feed off iron. Perhaps that high store of iron I had allowed so many metastases to form so quickly, 2
months after surgery. Iron is one of the needed food supplies for cancer. I've read that hemachromatosis puts
you at risk for cancer. Iron is stored in the liver and spleen, two places where I had metastases. I think the cancer
went there because that was where the food supply was.One of the supplements I use is curcurmin- it is also an iron chelator. The other supplement you may want
to try is called artemisinin. It binds to iron and blows up cancer cells and malaria. It is a popular treatment for
malaria around the world. My iron levels are now down to 20- highest was 334. I have not supplemented with Vitamin C.
If you have hemachromatosis, perhaps you shouldn't be supplementing with Vitamin C, as it might add to the problem.I was a big meat eater and liked my meat rare- (more heme) also, alcohol contains iron, if you eat steak and drink wine you
up the absorption of the iron. Yes, Vitamin C causes you to absorb more iron. I used to drink tons of fruit juice
before I got cancer. I haven't had fruit juice since I was diagnosed. High in sugar and makes you absorb iron. Two of the
things that grow cancer.That is why I say we all have to do a deep dive on our lifestyle to see what we were doing that caused any buildup
of toxins in our bodies. Metals are very damaging to our bodies, oncologists never talk about them in relation to cancer
but most doctors never test for them. Metals testing is very important. At my next draw, I am goingto test for
platinum (which is in the Carboplatin). Want to make sure it is all out of my body.You might want to go back and look at all your blood tests for ferritin to see if higher levels coincided with your
masses and higher CA 125 levels. I looked back at my ferritin level when I finished my 6 infustions of Taxol/Carbo:
I still had 2cm of tumors at the time. It was 135. A few months later, when I was declared NED, the ferritin was down
to 93. So I would be concerned if my ferritin went back up to a level of 135. I always look for trends in my blood tests.
You might want to get your ferritin levels tested more frequently to closely monitor your ferritin levels.Takingcontrol58
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This is interesting
This is interesting reguarding iron levels. I would say I was opposite. Perhaps one clue that I didn’t take that my cancer was brewing was that my iron levels were low and times before donating blood. I was a regular blood donor, so I didn’t think much of it since regular donars can see a drop in levels. When I was then later diagnosed I was ver anemic and had two blood transfusions. I wasn’t bleeding heavily when diagnosed either.
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