I am dealing with a fibrosarcoma low grade 1 but biologically high grade.
Description: the lesion from the rostral lower arcade is an expansile neopastic proliferation of interwoven bundles and streams of immature fibroblasts and variable amounts of collagenous fibers. Neoplastic cells encircle disrupted bone. The tumor cells are fusiform but in some areas are ovoid or stellate in shape. The nuclei are elongated or oval and hyperchromatic. The mitotic count (mitoses in ten high power fields) is less then one. The mucosa is hyperplastic and ulcerated and there is intense lymphohistiocytic,plasmacytic inflammation overlying the infiltrate. There is intratumoral hemorrhage multifocally. It is in the oral cavity surgery is not an option as adequate margins would not be obtainable.Oncology also said that this tumor does not respond to radiation it is radiation resistant, So we went alternative.
We are on immune health mushrooms(from a doctor they are being studied in a lot of the universities now), metatrol pro for immune health,artemisin, b17, vitamins,minerals, pancreatic enzymes essiac tea, high dose vitamin c. We recently started the high p.h therapy. The tumor shrunk at first and turned white. Now it is painful and inflamed.It started red and healthy the doctor called it angry. Now it looks weird and white. Oncology is not certain what is going on. They do not believe immunotherapy helps this type of tumor. The doctor has mentioned a vaccine but the tumor would have to grow to create it it is not big enough at this time. I have contacted U.C Davis and John Hodgkins in regards to cryoablation and or possible radiation (just to get another take on radiation) concerning this. We did everything wrong from the beginning, first thinking the tumor was benign there was a partial removal then a biopsy which came back malignant. Any thoughts or direction would be greatly appreciated. If our plan is a good one we would like to continue.If it is at all possible to beat this without toxic treatments I will give it my all. I really enjoyed your book. You are amazingly courageous and inspirational.
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Dear Lisa,
Thank you for sharing your experience with us. Sadly, many sarcomas are misdiagnosed at first. Often it's because it is rare and oncologists have little experience.
It's interesting/intriguing to hear the potential response to alternative therapy. In our own experience, and in that of other patients we knew who tried alternatives, they *may* have helped a little but eventually the tumors advanced. So we definitely would not rely on those alone. Instead, we feel it is critical to fully leverage conventional medicine but only if the data supports it.
One very important message we would like to convey:
If this is your ONLY tumor, and if it shrinks and BECOMES operable, we would seriously think about surgery. In our book, we describe the euphoria of Rene's jaw recurrence shrinking. But it suddenly rebounded. Retrospectively, the "optimal" decision for non-metastatic disease would be to operate then and there. (Although in Rene's case, the likelihood of metastatic disease or local dissemination was very, very high already -- but if your's is Stage 1, perhaps curative surgery should be a priority).
Whatever the case, we would be sure to work with a highly experienced sarcoma oncologist, traveling if necessary to a place like MD Anderson if possible. An experienced oncologist might be able to give you a better feel for whether it's already gone metastatic or if it's truly likely localized.
If your disease remains inoperable (or has gone metastatic), we would investigate the option of PD-1 in combination with cryo and/or radiation. (even if cryo/radiation cannot be done to all of the tumor, it could potentially synergize with checkpoint blockade to unleash the immune system against tumor cells).
There are also other immunotherapies that can be investigated besides PD-1. Some use viruses or bacteria to target tumors.
The only nontoxic treatment that we know (and that we think has strong enough anticancer activity) is High dose omega3 + omega6 restriction (see chapter 15).
Keep in touch and all the very best,
Edward & Rene
Hi Renee, thank you so much for your energy and time. If I did the omega 3 omega 6 restriction do I stop the immune mushrooms and metatrolpro immune boosters? I am leaning towards surgery now it is possible but deforming. I am scared. Not sure if it is too late
Hi Lisa,
In theory, Omega3 will suppress inflammation and therefore possibly T-cell activity. So if there is any evidence your tumor is shrinking/dying from whatever you're doing right now, there's the theoretical risk that high omega 3 may compromise that. But it is theoretical.
In practice, it could be synergistic (through removal of immunosuppressive factors/immune cells). In theory, it could also potentially exert direct antitumor effect directly. There are various possible pathways by which this happens such as direct tumor killing effect of DHA, inhibition of PDGF (platelet-derived growth factors) etc.
Unfortunately, it'll have to be your call.
Regarding surgery, it is so, so important to have a sarcoma oncologist and surgeon to get a crystal clear idea of the curative potential of surgery. Otherwise, you might be risking deformity and possibly poor quality of life issues from the morbidity for nothing. Second or third opinions are very important (only from highly experienced sarcoma oncologists and surgeons who have seen many of your type of cancer (NOT just any oncologist/surgeon who says they are experienced). As you can see from our book, we really paid attention to this information-gathering process in order to make an informed decision. For rare diseases such as sarcomas, it is really critical not to blindly trust an opinion just because it comes from someone who is reputable. That oncologist/surgeon needs to have real experience seeing/tracking sarcoma patients with your kind of sarcoma over a longer period of time. That's why we strongly recommend going to MDA or another high volume sarcoma center.
We saw the person most familiar with sarcoma. I understand it is rare. He says cut it out nothing kills these beasts. I tried the cesium/chloride high ph therapy and the liver enzymes shot through the roof. I stopped it and did high dose vitamin c . ALT almost back to normal white blood cells very elevated my hope is that the immune system is fighting hard to say. Is there time to wait for the experts? That is the fear.
Surgery, if you can "get it all" is pretty much the primary "cure" for localized sarcoma. We would be choosy about which surgeon we go with. It is not so much the surgical skill that's the issue, rather the philosophy of "how much to cut". We love our surgeon at Stanford who operated on Rene twice. But objectively speaking, there were pretty different philosophies between what we heard at Stanford versus the surgical opinion from MDA and MSKCC (high volume sarcoma centers). The difference was, in our opinion, due to the higher volume of cases of rare sarcomas seen at these institutions.
MDA was much more aggressive in terms of how much to cut away. We had 4 surgical opinions for Rene's second recurrence. Stanford's conservative recommendation contrasted with MDA, MSKCC and Karmanos. The latter 3 said to take out a much bigger area. Even so, MSKCC was the most inconsistent -- on the one hand, the surgeon said there was absolutely zero chance of a surgical cure, yet he recommended a big surgery PLUS intraoperative radiation (see chapter 13). At least the MDA surgeon believed there was a "good chance" surgery could "get good mileage" which was consistent with their recommendation.
Ultimately, we decided to go with MDA's more aggressive recommendation. But we had the surgery performed by the Stanford surgeon. Because of our strong relationship with our Stanford surgeon, he didn't take offense at us asking for surgery to be done in a way different from what he recommended. But it required us having done our homework and having conviction.
Best,
Ed & Rene
The oncologist said cryoablation does not address the margins the most biologically active part. He also said it can not be done with radiation it results in severe necrosis on the bone because of where the tumor is located. I would much rather go this approach but not if it means I run out of time and the sarcoma takes over. One more question, is the visual tumor on the outside shrinking an indication of the activity of the tentacles the biologically active part of the tumor? Or is the tumor shrinkage( which I know can rebound at any moment )any indicator of what is happening with the treatments we are using? I would like to delay until August 9th for surgery they keep saying no you have to move fast with sarcoma. This is when the expert on sarcoma, at our chosen treatment center who does cryoablation comes back from her vacation. I feel like I am controlling it. I know this has to be my call.
What your oncologist probably means is that cryo doesn't give you the ability to analyze margins incrementally during the procedure -- only surgery can give that -- ie the surgeon sends a sample from the margin to the pathologist, waits for an analysis and cuts more if tumor is seen. That is why only surgery is "curative".
Cryo, like radiation, is a best-guess at how much to treat to "get it all".
We would only use cryo in the setting of clear metastatic disease where it becomes "less important" to "get it all". Mainly for the potential synergies with immunotherapy. We would not use cryo as a replacement for *curative* surgery (where the intent is to "Get it all" and be cured for life).
That is why in our first response to you we urged that you seriously consider surgery, based on an informed analysis from highly experienced oncologists. Their experience is key. Firstly, they must do very thorough work-up to be as sure as possible that your cancer has not spread elsewhere. Secondly, they must have experience to know the chances surgery can be curative (i.e. no point cutting it out if it's going to spread everywhere in 6 months).
We can't answer your question about visual tumor shrinkage correlating with retracting tentacles. Only a sarcoma oncologist who has seen enough cases of yours can speak meaningfully. Even then, they may not know. But generally speaking, tumors do not shrink in size.
If it confirmed shrinking, it may be a sign of treatment effect. Perhaps one alternative explanation is it had a liquid portion that burst? For all of these, you'd have to work with your oncologist/radiologist to analyze the images.)
To summarize, the key point in your case, we feel is the odds of curative surgery versus already-metastatic disease. That information is what we'd focus on getting.
- You can join sarcoma forums and ask other patients with your diagnoses
- You can download/pay for scholarly research (use google scholar) for papers on your sarcoma.
- You can ask your oncologist for data.
- You can send for second opinion from Partners Healthcare at DanaFarber.
- You can try to get an expedited second opinion at a high-volume sarcoma center like MDA.
A quick google search yields this article:
http://www.curesarcoma.org/patient-resources/sarcoma-subtypes/fibrosarcoma/
Which seems to suggest that the local tumor might be non-aggressive, but behaves badly and easily spreads.
It's difficult, we know, to interpret the statement "your sarcoma is fast moving -- must cut out right now!" What if they're right? Would you regret missing that chance for curative surgery? On the other hand, what if you go through surgery then find out your tumor had already spread, and that chances of cure is 0 and have to live with morbidity of surgery for the time you have left.
No easy answers. The main thing you can do is be informed and make the best decision possible and don't look back.
All the best,
Ed & Rene
Greetings to Renee and Eddie. I did find the research on patient DH who cured his sarcoma with high Omega 3 restricted omega-6. It seems everything just went cold after that there's been no more research no more findings and no more nothing just that one case so what would be the odds that such a thing would work
The late Dr. Old used to tell us that single case studies should never be ignored, and should be scrutinized in detail.
The reason why we decided to follow Patient DH's footsteps is because he did absolutely nothing else (except take aspirin & multivitamins). It is nearly impossible to find a case study where tumor shrinkage could be attributed to a clear cause. Most patients would try a few chemo regimens. Those interested in alternatives would try multiple combinations of alternatives all at once. Many would do both conventional chemo + alternatives, thus obscuring the picture.
It's hard to believe that something as simple as omega3/6 (although it takes discipline to adhere) can lead to tumor remission. It is also human tendency to seek complex solutions (with big names attached, for peace of mind). But knowing sarcoma, DH's biopsy-verified MFH simply doesn't disappear by itself. There is always a reason.
FYI, it should be noted that Rene's tumors completely ceased after she began Omega3/6. Before that, we could only claim that immunotherapy was able to generate T cells, and that the rate of growth of her tumors seemed to be initially suppressed perhaps by adoption of immunotherapy early in her disease. However, her lung tumors were accelerating even with repeated cryo with Coley's.
One could make the case (which we do believe) that repeated cryo "unearthed" tumors on the scans -- ie caused her immune cells to "bring to light" previously unseen metastases. Perhaps repeat weeding with cryo alone would have done the job.
But only when omega3/6 was added could we make the following 2 absolute conclusions:
1) A tiny 4th donut lesion we were tracking disappeared (and has not since reappeared)
2) All tumors ceased -- which is highly unlikely given the distribution of her cryoablated lung lesions in different lobes.
Finally, there is rational logic and, in our view, compelling science supporting omega3/6 (which we describe in Chapter 15 - see references)
Best,
Edward & Rene
Hi Renee. I'm up here UC Davis in Sacramento I signed all the paperwork and was ready to have the surgery to remove the fibrosarcoma as of so far it does not appear to have metastasized. Tomorrow they will run an extensive CT to know exactly when they told me how far back they have to go on the jaw I teared up a little the top surgeon said to hold off maybe we can talk about cryoablation something weird happened the other doctor called back and said that they don't believe it's fibrosarcoma because it's not acting like it it should have progressed much faster they want to do another biopsy I can't help the people in the book who did the alternative therapies and their tumors always advanced that is my fear I did start the restricted omega-6 High Omega 3 I'm pretty disciplined I think I could definitely adhere to it I feel really great on it as well I know it's a real long shot I know all these things have to be my call
We would not do high omega 3 close to surgery, cryoablation, or any procedure that has a risk of bleeding. Fish oil affects the ability of blood to clot -- see Chapter 15, section "My Third Lung Cryoablation", pg 258-259. Keeping the diet low omega 6 could be done even when one is not on high omega 3. Then the high omega 3 can be resumed after surgery.
I don't know how you get them to biopsy stuff so quickly they say that it has to be stained and examined and everything. They said this can't be high grade soft tissue sarcoma because it's very invasive and it would have kept growing so they took most of the tumor but not all of it I'm kind of scared now remember in the book where they did their alternative therapies just like me but I did the mushrooms and those mushrooms by themselves are supposed to be killing these tumors they said no way with a high-grade sarcoma has it not grown at all in 3 months a little scared they cut into it but didn't get clean margins I'm reading some studies where cryoablation help the immune system but I found some studies were the tumors get bigger very very confused. I kept taking the fish out but I didn't have any problems nothing with bleeding or anything like that they said all the labs and everything look great little high on the liver enzyme but I know because I tried to do that high pH therapy that's what did it and I stopped it right away they had their chance to cut into this and they stopped it. I want to do the cryo ablation they're saying it has to be a misdiagnosis
Biopsy - it usually takes a few weeks for more detailed analysis of the tumor sample.
Identity of the resected mass - Even though the doctors are perplexed by the growth pattern of your mass, the biopsy result will give a clear answer to whether the surgically removed mass was tumor or not. Also of interest is if there are lymphocytes (immune cells) or necrotic (dying) cells in the area.
Cryoablation - Cryoablation doctors will only consider cryoablating if there is a localized mass amenable to cryoablation, larger than 0.5cm. If most of your mass was removed by surgery, cryoablation will not be an option until a mass regrows.
Hi Renee they took 3 teeth now they are saying myxosarcoma. Here Mandibular mass fourteen irregular up to 0.7 cm in length sections of poorly demarcated, non encapsulated mass are examined. All examined sections have neoplastic cells extending to both lateral and deep margins. In two sections the mass extends to the gingival surface. The mass is composed of spindle cells of variable morphology distributed haphazardly through an abundant stroma. The majority of the mass is composed of short, interlacing bundles of stellate to spindle-shaped mesenchymal cells suspended in variable amounts of basophilic myxoid matrix and scant wavy collagen fibers that variably encompass moderate amount of amphophilic cytoplasm, oval to fusiform nuclei with finely stippled chromatin. Anisocytosis and anisokaryosis are moderate to marked with no mitotic figures were seen in 10, 400x fields. Two small odontogenic rests of malassez or serres are present within the examined sections. Dissecting throughout the tumor are small numbers of lymphocytes and plasma cells. Underlying one section of hyperplastic gingiva is a large aggregate of plasma cells, lymphocytes and histiocytes with fewer numbers of neutrophils. I remember your comments on necrotic cells and lymphocytes. In the first biopsy mitotic figures were present but 1/10
It seems like it's a very complicated diagnosis. I'm glad that what the report describes has been taken out.
Has the UC Davis team consulted with high volume sarcoma centers (such as MD Anderson, Memorial Sloan Kettering or Dana Farber) about it?
The reason I ask about getting a pathology second opinion: My tumor was very rare. When I was first diagnosed, Stanford looked at it, then I had a second opinion reading from Memorial Sloan Kettering. Both came up with synovial sarcoma. However, when I went to MD Anderson, they looked at the slides, and they said my tumor was a little different from the usual synovial sarcoma. They were the only cancer center that was able to make this observation. Most likely this is due to their experience with seeing a lot more sarcomas than other places.
Maybe when you're recovered from surgery and feel well enough to travel, you can make an appointment with a MD Anderson oncologist -- especially one who is running sarcoma immunotherapy trials, will be beneficial (see "Sarcoma Immunotherapy Trials", post #6 at http://www.curingcancerbook.com/where-can-we-get-slides-tested-ny-eso1-e...)
Wishing you a smooth recovery, strength and hope every day.
We are doing so well right now. Everyone loves your book. You two are truly anointed people. I am trying to discern if a partial acl tear could be do to all the immunotherapy we are using. All natural protocol and now we do not see any tumor at all since starting high omega 3 low omega 6 diet. We are using ionic silver as well. We would like to know if a stem cell transplant in theory could cause cancer to revive the sarcoma tumor. The stem cells would be in the knee area. Oncology and orthopedic says it is our call but we would have to sign a waiver. I would like to avoid an aggressive knee surgery if possible, any thoughts? This is a low grade tumor and the stem cells would be our own fat transfer adult stem cells. Thank you for all the positive thoughts we continue to spread the word.
We're so glad to hear you are doing well!
What immunotherapy are you currently doing?
We have a philosophy of "not rocking the boat" when things are going well.
If the knee surgery/ stem cell are not absolutely necessary, we personally would not "rock the boat". We are not familiar with the use of stem cells and cancer risk. Surgery can cause inflammation and if cancer is in the surgical area, it may cause it to grow faster.
A few thoughts on non-invasive ways that may help arthritis: 1) High omega 3/ low omega 6, 2) kinesiology tape to decrease swelling (physical therapist)
Please note that if you are planning on surgery, stop the high dose fish oil 2-3 weeks before the procedure to minimize bleeding risk.
Hi Lisa - Congratulation that your natural protocol along with high omega 3 low omega 6 diet is working so well for you.
I am wondering if you have been monitoring the impact of 24 g omega 3 (if that is what you are taking?) on the your White Cell Count (WCC) in particular, T cells: CD 4, 8, 16 (Lymphocyte Subsets)?.
May your healing continues.
Thank you
I am taking mushrooms, metatrol pro and now I have added colostrom and( immune support GSH Gold) which helps glutathione production, I know that is controversial.