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DCA Discussion Forum
xrayon
Member since Dec-25-09
7 posts |
Dec-25-09, 09:38 AM (PST) |
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"Multitple questions regarding gastric cancer"
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Hi Guys, just to give you the heads up, this post is not about DCA, although we are considering adding it at some point. None the less we are looking for any useful information that anyone might be able to provide on any of the items listed at the end of the post. If you can help or refer us to someone who can explain any of this I would greatly appreciate it. Below is our story: A little over a month ago my otherwise healthy 36 year old aunt was diagnosed with stage IV gastric cancer showing a signet ring cell adenocarcinoma histology. Before confirming her diagnosis she had a CT scan (with oral and IV contrast) and a number of tumor markers checked out. Among those were Cancer Antigen-GI (CA 19-9), Cancer Antigen 125 (CA-125) and Carcinoembryonic antigen (CEA) - all of which were elevated. Her levels of these markers as measured on Nov 21/09 are listed below: * CA 19-9 - 1303 (normal reference values: 0-37) * CA-125 - 212 (normal reference values: < 35) * CEA - 137 (normal reference values: 0-5)
Shortly after diagnosis she was started on the TCF regiment - Cisplatin, Fluorouracil (5-FU), & Docetaxel. Approximately two weeks after the administration of her first TCF round she started experiencing issues with her ability to have regular bowel movements. After not being able to go for about 5 days we had taken her back to the hospital where they did blood work and a CT scan (this time with oral contrast only). They did not find any bowel obstruction but did confirm that her kidneys were malfunctioning due to some lymph nodes pressing on some channels leading up to the kidneys. They preformed a small procedure to relieve the pressure from those channels and her renal function returned to normal. A day later we found out the results of the blood work that showed all of her tumor markers went down significantly - levels shown below: * CA 19-9 - 657 * CA-125 - 98 * CEA - 55.7 The puzzling thing about these results was that at the same time her CT scan showed a new bone lesion that was not seen on the initial scan done about a month before.
Our guess is that this lesion likely existed as a micro metastases upon initial diagnosis and has grown to become visible in the month between the two scans but this is just our own hypothesis. Due to this apparent mixed result (tumor markers went down but new lesion appeared) her oncologist decided to switch her from the TCF regimen to Fluorouracil (5FU) + Leucovorin and Irinotecan administered every two weeks. We started this new regimen on Wed and finished the first course on Friday. In addition we had also convinced our oncologist to put her on a number of biological agents, namely Bevacizumab (Avastin) as an anti-angiogenesis agent given directly after chemo along with blood work on the Friday and the EGFr tyrosine kinase inhibitor Erlotinib (Tarceva) given daily thereafter. We are currently awaiting to see if her cancer is HER2+ so we can start her on either Trastuzumab (Herceptin) by itself or in combination with Lapatinib (Tykerb) which is another HER2 blocker. We had also started using Opiod Growth Factor (Met-Enkephelin) injections in an attempt to slow down the growth of her cancer - though this is not an FDA approved treatment at this time. We are also considering putting her on a COX-2 inhibitor (Celebrex) and are in the process of obtaining AHCC and Krestin (PSK or PSP) (mushroom extracts used in Japan/China as adjuvant treatments for cancer patients). On the following Monday when we called in to check her HER2 results, we were told that her tumor markers as measured directly after the completion of the new chemo round on Friday went up again, one of them going higher than baseline. As of right now I don't have the exact numbers nor do I know which one shot above the baseline reading but needless to say we are fairly concerned. We were hoping to hear from other people as to the possible reasons for this as we are somewhat confused about how these markers (which presumably indicate extent of disease) work and how we should interpret this sudden rise directly after chemo administration. If you can shed any light on any of the following questions we would greatly appreciate it: * How long does it take for chemotherapy (specifically 5-FU and Irinotecan) to exert its effects? That is, will it start disrupting cell division and cause cell death immediately upon administration or does it take some time to take effect? * Once administered, how long is 5-FU and Irinotecan actively working to disrupt cell division/cause cell death? * Is it possible that the tumor markers we are seeing shoot up directly after the completion of chemo administration are due to cancer cells dying and releasing their contents into the blood stream, which includes some or all of tumor markers she has had tested? * Is is possible that the rise in tumor markers is associated with a change in the metabolism (clearance) of these markers due to changes in renal/hepatic function? * Considering the fact that her second CT scan was done without IV contrast and is therefore less sensitive/accurate for bone evaluation, is there any possibility that the new lesion we are seeing on the bone is not actually a metastases but something else? Her oncologist assumed that this is a cancerous lesion considering her recent diagnosis but we find it strange that the lesion appeared during chemotherapy with tumor markers going down and would like to eliminate any other possibilities if they exist. If you know of anything else that a CT scan might show that would appear like a bone lesion we certainly welcome your suggestions. * Her oncologist had changed the chemo regimen from TCF to 5-FU and Irinotecan and Leucovorin based on the mixed results (tumor markers going down but new bone lesion detected). We would appreciate if you can share any information that you have regarding whether this was a good decision or a bad one. * Assuming the bone lesion is a new metastases, is it possible that this new colony of cancer cells is not producing the same tumor markers, which would explain the new mass appearing while tumor markers are going down? * Are the enlarged lymph nodes more likely to be inflammation or perhaps a sign that the cancer itself has grown? * We would also appreciate any feedback regarding the introduction of the COX-2 inhibitor into the mix as well as any information that you may have on AHCC and/or Krestin. If you have any experience/knowledge about these being used in cancer patients please let us know. * Finally, do you know of any good results of a DCA regiment for gastric cancer? Any and all input would be greatly appreciated! Happy holidays everyone! Allan. |
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- RE: Multitple questions regarding gastric cancer,
KylieOz, Dec-25-09, 11:11 PM, (1)
- RE: Multitple questions regarding gastric cancer,
dimitrisk
, Dec-26-09, 01:34 AM, (2)
- RE: Multitple questions regarding gastric cancer,
xrayon, Jan-06-10, 12:59 PM, (7)
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KylieOz
Member since Nov-23-09
12 posts |
Dec-25-09, 11:11 PM (PST) |
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1. "RE: Multitple questions regarding gastric cancer"
In response to message #0
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Hi! Great letter and very concise. The only thing I would make comment on is to ask if PET scanning is available to you? Whilst CT scanning is still used, it is my understanding that PET scanning is far more clearer in diagnosising (and clarifying)secondary lesions. I hope you get answers to your many questions...I'll be watching with interest. Best wishes to your aunt and your family. Kylie |
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xrayon
Member since Dec-25-09
7 posts |
Dec-27-09, 08:46 AM (PST) |
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3. "RE: Multitple questions regarding gastric cancer"
In response to message #1
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Thanks Kylie, I appreciate your feedback. I will be asking my family to discuss doing a PET scan with her oncologist and hopefully we can arrange for it soon. Though I do tend to also agree with the post below that it may not be as useful without the context given by a previous PET scan. None the less I think we will pursue this course so we can better asses her progression/overall response to treatment in the future. Thanks again for all your input! Allan. >Hi! Great letter and very concise. > >The only thing I would make comment on is to ask if PET >scanning is available to you? Whilst CT scanning is still >used, it is my understanding that PET scanning is far more >clearer in diagnosising (and clarifying)secondary lesions. > >I hope you get answers to your many questions...I'll be >watching with interest. > >Best wishes to your aunt and your family. > >Kylie |
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dimitrisk
Member since Mar-19-08
217 posts |
Dec-26-09, 01:34 AM (PST) |
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2. "RE: Multitple questions regarding gastric cancer"
In response to message #0
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I would try to answer some of your questions and give you some advice from our experience. Yes, we have seen tumor markers flying just after chemo, and returned to much lower values a few weeks later. Your explanation is very possible. Tumor markers are not reliable in evaluating disease status, and oncologists pay little attention on those. The most informative test is CT. Disease progression is possible even while on chemo, but it is also possible a wrong CT evaluation about possible bone mets. Regarding PET scan suggested by Kylie, I don’t think it could make you wiser. PET scan is never clear and has meaning only when it is compared to a previous one. At this point, it will not give much information. A better thing that you can do is to take a Chemosensitivity test. You send 25 ml of blood and they isolate circulating cancerous cells. They develop several culture of these cells, and tests to find in what chemos or substances they are sensitive. You can ask them to check if DCA is effective or not. More explanation and also four samples of such tests you can find here: http://www.atmctx.com/cancer-test/. The cost is about 1300 $US, but I think it is worth taking. My sister has done two tests already, and we are going to do one more in order to better decide about her next treatment. There is a wealth of information you can take from this test. There is long discussion between cancer specialists on these test, but so far they are not mainstream. Some oncologists use them (like ours), but others not. People than know me in this forum can assure you that I am not a dealer of anything. I really believe in this test and this is the only reason I strongly suggest it. It has helped us a lot to organize what to take and what not. There are so many things that might help and it is really difficult to decide. Another suggestion is to consider LDN. It is a very powerful treatment. Here you can find a discussion on LDN and also some very good links: http://www.thedcasite.com/dcaforum/DCForumID10/161.html She can start LDN right now, while on chemo. I think LDN is better than OGF injections, but it takes about 6 months to start working. I wish you best luck for your aunt, and Happy Hollidays. Dimitris
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xrayon
Member since Dec-25-09
7 posts |
Dec-27-09, 10:28 AM (PST) |
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4. "RE: Multitple questions regarding gastric cancer"
In response to message #2
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Hi Dimitris and thanks for your input. Please see my response to your points below: >I would try to answer some of your questions and give you >some advice from our experience. > >Yes, we have seen tumor markers flying just after chemo, and >returned to much lower values a few weeks later. Your >explanation is very possible. Tumor markers are not reliable >in evaluating disease status, and oncologists pay little >attention on those. The most informative test is CT. Thanks, that makes us breath a little easier as we weren't sure if this is common or not. I guess we can only wait and see what the next test will show. > >Disease progression is possible even while on chemo, but it >is also possible a wrong CT evaluation about possible bone >mets. Regarding PET scan suggested by Kylie, I don’t think >it could make you wiser. PET scan is never clear and has >meaning only when it is compared to a previous one. At this >point, it will not give much information. Good point. As noted in my response to Kylie, we will likely still pursue a PET scan but will only use it in the context of another such scan and in the meantime rely primarily on her CT scans. > >A better thing that you can do is to take a Chemosensitivity >test. You send 25 ml of blood and they isolate circulating >cancerous cells. They develop several culture of these >cells, and tests to find in what chemos or substances they >are sensitive. You can ask them to check if DCA is effective >or not. More explanation and also four samples of such tests >you can find here: http://www.atmctx.com/cancer-test/. The >cost is about 1300 $US, but I think it is worth taking. My >sister has done two tests already, and we are going to do >one more in order to better decide about her next treatment. >There is a wealth of information you can take from this >test. There is long discussion between cancer specialists on >these test, but so far they are not mainstream. Some >oncologists use them (like ours), but others not. People >than know me in this forum can assure you that I am not a >dealer of anything. I really believe in this test and this >is the only reason I strongly suggest it. It has helped us a >lot to organize what to take and what not. There are so many >things that might help and it is really difficult to decide. > That does sound like an attractive option. I'm guessing this is not the same as the Chemo-Fit test discussed on the Medicor website being as this one only requires a blood sample? Assuming this is not the Chemo-Fit test, would you recommend one over the other or do you think doing both might be better yet? >Another suggestion is to consider LDN. It is a very powerful >treatment. Here you can find a discussion on LDN and also >some very good links: >http://www.thedcasite.com/dcaforum/DCForumID10/161.html >She can start LDN right now, while on chemo. I think LDN is >better than OGF injections, but it takes about 6 months to >start working. OGF actually originated from results by initial LDN therapy. Naltraxone is an opioid antagonist which blocks the opioid receptors in your body from being activated (including the ones OGF binds to). When given in a low dose it only blocks them temporarily and partially, leading to feedback mechanisms in your body to either up-regulate the receptors (express more of these receptors on the cell membrane thereby increasing their sensitivity to the circulating OGF) or make your body produce more endogenous OGF, which again would increase its overall effects in the body. The problem with LDN therapy is that while it is cheaper and easier to obtain it does not allow you to take any opioid drugs for pain relief, which my aunt is on (Oxycontin). It also seems more logical to me that increasing the exogenous OGF would likely yield more direct results as compared with LDN therapy which puts you on cycles where OGF's activity is blocked temporarily and relies heavily on your body's response to this blockage and the overall amount of endogenous OGF your body produces (which may or may not be impaired in cancer patients). None the less, if you happen to have some information in this regard that I don't I would appreciate you sharing it with me as our strategy to fight her cancer is continuously evolving. > >I wish you best luck for your aunt, and Happy Hollidays. > >Dimitris Thanks again for your reply and all the best to your and your sister, Allan.
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dimitrisk
Member since Mar-19-08
217 posts |
Dec-27-09, 04:05 PM (PST) |
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5. "RE: Multitple questions regarding gastric cancer"
In response to message #4
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> That does sound like an attractive option. I'm >guessing this is not the same as the Chemo-Fit test >discussed on the Medicor website being as this one only >requires a blood sample? ORT (Medicor's chemofit) require tissue from a tumor. This has two disadvantages. It can be used only after tumor resection, and in case of metastases, different tumors might have different characteristics. RGCC test is simpler, since it requires only 20-25 ml of blood, and examines CTCs that contain populations from all tumors, not just one of them. Also, they give you a lot of information, like receptor overexpration, sensitivity to 40 different supplements, and sensitivity to temperture and radiation. Download some reports from the link above, and you will see excactly what information you can obtain. As far as I know there are several labs that do CS/CR tests and use kits from diferent companies. These labs don't advertise, maybe because they are affraid the establishment, since they are not approved yet. Frankly speaking, I don't know which one of these two is the best, and I don't know if there is a better one. RGCC is located in northern Greece, so it is more convienient for me. >The problem with LDN therapy is that while it is cheaper and >easier to obtain it does not allow you to take any opioid >drugs for pain relief, which my aunt is on (Oxycontin). From what I have learned these two years, opioids are not good for cancer patients since they downgrade immune system. So, if it is possible, your aunt should try steroids for pain relief. |
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xrayon
Member since Dec-25-09
7 posts |
Dec-30-09, 04:00 PM (PST) |
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6. "RE: Multitple questions regarding gastric cancer"
In response to message #5
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>> That does sound like an attractive option. I'm >>guessing this is not the same as the Chemo-Fit test >>discussed on the Medicor website being as this one only >>requires a blood sample? > >ORT (Medicor's chemofit) require tissue from a tumor. This >has two disadvantages. It can be used only after tumor >resection, and in case of metastases, different tumors might >have different characteristics. RGCC test is simpler, since >it requires only 20-25 ml of blood, and examines CTCs that >contain populations from all tumors, not just one of them. >Also, they give you a lot of information, like receptor >overexpration, sensitivity to 40 different supplements, and >sensitivity to temperture and radiation. Download some >reports from the link above, and you will see excactly what >information you can obtain. > >As far as I know there are several labs that do CS/CR tests >and use kits from diferent companies. These labs don't >advertise, maybe because they are affraid the establishment, >since they are not approved yet. Frankly speaking, I don't >know which one of these two is the best, and I don't know if >there is a better one. >RGCC is located in northern Greece, so it is more >convienient for me. >(A.K.) We are in the process of getting a new oncologist right now. I can't tell you how frustrating a problem it is to find a good one. We have spoken to so many so far and most strike me as the closed minded types that aren't willing to explore less conventional or less proven but promising treatments. To them she is just a patient of course, but I doubt they would have the same attitude if this was a loved one. I know that I personally have resigned myself to the conclusion that to beat her cancer we are going to have to employ everything that we can find. The good news is that I think we have found a good doctor who seems open minded and is willing to consider things that aren't the standard of care. So now that looks like its taken care of I think the next step would be to try and sift through the many possible adjuvant therapies we could try and I think this test lands itself well to that. I'll read up some more on it soon and let you know my final conclusion or if I have other question. Probably will also run this by the doc to see what he thinks and will post his recommendations here should he have any. > > >>The problem with LDN therapy is that while it is cheaper and >>easier to obtain it does not allow you to take any opioid >>drugs for pain relief, which my aunt is on (Oxycontin). > >From what I have learned these two years, opioids are not >good for cancer patients since they downgrade immune system. >So, if it is possible, your aunt should try steroids for >pain relief. (A.K.)You know I have heard that as well and being as OGF is involved in negative cell proliferation signaling its not such a stretch to imagine that other opioid signaling pathways may contribute to proliferation. But that does raise the question of why aren't anti inflammatory steroids used more often for pain relief in cancer patients. I will discuss this with the doc as well and see what he says - will post any followup here. Allan. |
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xrayon
Member since Dec-25-09
7 posts |
Jan-06-10, 12:59 PM (PST) |
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7. "RE: Multitple questions regarding gastric cancer"
In response to message #0
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Hey guys, to those of you that are following, we have met with the new oncologist this past Monday and devised a plan of attack. Its a bit radical on the chemo side so I was hoping you might be able to comment on it. Here is what my aunt will be doing: * Chemo (low dose, high frequency administration - every 2 weeks) - 5-FU + Leucovorin - Oxaliplatin - Docetaxel - Irinotecan - Gemcitabine * Adjuvants - Avastin (IV following chemo) - OGF (daily s.c. injections except for days when chemo is given) - Cimetidine (an H2 anatgonist given daily) - Krestin PSK/PSP (Japanese mushroom extract given daily) - Vitamin D (at least 1000IUs daily) - Calcium (1000 - 1200IUs daily) - Multi vitamin (given daily) In addition we will also be doing a chemo sensitivity test once the chemo has had a chance to do its thing. At this point we are really looking for any other suggestions - that is anything showing any promise, is non invasive and with a very low probability of interaction with the agents listed above as well as a good safety profile overall. If you know of anything like that or have any other suggestions or comments on the above regimen, I would appreciate it if you could share it with me either here or in private. Allan.
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dimitrisk
Member since Mar-19-08
217 posts |
Jan-10-10, 02:40 AM (PST) |
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8. "RE: Multitple questions regarding gastric cancer"
In response to message #7
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Just a tip about chemo: If she can tolerate it, it might help trying 48 hour starvation before chemo and 24 hours after it. There is a lot of research on this issue. A month ago my sister had a second round of regional chemotherapy (stop-flow) and remained completely without food for 46 hours. Then she ate her first meal 23 hours after treatemnt. The results were really good. She lost no hair at all, she had a lot of apetite, and felt no tired, so could walk long distance just two days after chemo. The only side effect was a little drop in white blood cells (WBC) that went up again with proper medication. At her first treatment she had lost a lot of hairs, had big drop in WBC and for more than a week she was feeling very tired. We are waiting for the new CT to see if tumor shrinkage was also good. However, the difference in side effects between the first and the second treatment is remarkable. Searching around, I found that some patients have tried 72 hour starvation with very good results. At the original experiment, mice had done very well with only 48 hour starvation, and it is better achievable. |
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dimitrisk
Member since Mar-19-08
217 posts |
Jan-11-10, 03:13 AM (PST) |
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11. "RE: Multitple questions regarding gastric cancer"
In response to message #10
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I am not a doctor and this is just my opinion, but if I were in your aunt's case I would try starvation option. The whole idea is to protect healthy cells from chemo, and for a person with low weight this is more important. Following starvation option, she will get much better apetite after chemo and so will regain lost weight. Otherwise, chemo will make her lose her apetite. I think 118 pounds is not that bad for trying. I undertand how difficult is staying without food for so long, but usually cancer patients have low apetite and can manage it better. In case she decides to do starvation option, it might be better to go for the regular chemo dose every 3 weeks, or whatever the right chemo protocol is. Also, I think that hospitaliazion while on chemo would be a good idea. Just for 1 day before and 1 day after. Low dose chemo is used for long term administration and its purpose is not tumor shrinkage but rather to slow down desease progression.
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