Has anyone tried Iscador?
Hi All🤗
I am wondering if anyone has tried this therapy at "any time" during their breast cancer journey?
I deal with an Immune Deficiency...Common Variable Immune Deficiency, which affects my B and T cell production and function. While I receive gamma globulins to replace these cells, I still deal with chronic low WBC counts and low Natural Killer Cell counts. Chemo and Rads would just blow a complete "hole" in my immune system, even neurlasta might not completely deal with the issue.
Since I am dealing with high risk due to familial cancers and ALH.....I am looking for another way to energize my immune system so that I possibly could pursue a PMX on my own terms...and not wait for the "other shoe to fall", like a DX of something further up the neoplastic line.
I have often wondered if insurance would pay for a few treatments of Neurlasta while I undergo a PMX, especially with my immune issues. Probably not
I can afford the Iscador, and would be willing to stay on it for life.....I would go back to U of Michigan and pursue this avenue thru their integrative medicine center.
Sooo, Anyone try Iscador? And if so, where did you receive treatment?
Comments
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Neulasta is usually given after each chemo treatment, not after surgery, as the whole point is to mitigate the damage chemo causes to the immune system by killing the bone-marrow cells that make the necessary white blood cells. Not sure why you’d expect to need it for a PMX, as surgery doesn’t have the same effect (and though radiation does immunosuppress to a degree, it does so via a different mechanism from chemo). Without concrete proof that you are immunocompromised, and that it’s due to a mechanism by which Neulasta can remedy it, not only wouldn’t insurance pay for it but most reputable practitioners wouldn’t administer it no matter what you were willing to pay.
As to Iscador (mistletoe), it’s used in Europe (and not in conventional medical facilities), but not here. And there is no chemotherapy (synthetic or natural) given for ALH or prophylactically in an otherwise healthy patient with no genetic mutations. Who has told you you are at high risk due to family history? What is your family history: which cancers, what degree relatives? Yes, a PMX might make sense IF you’re truly high-risk. But “energizing” your “immune system” as either adjunct to or substitute for PMX makes no sense. And why would you even think you’d be recommended chemo or rads without a cancer diagnosis, especially if you undergo PMX?
And mistletoe is a poison. (Yeah, it’s natural. So are foxglove, taxol, mustard gas, deadly nightshade, curare, castor bean/ricin, etc.). If (and that’s a big “if” without double-blind studies) it kills cancer that’s probably because it is cytotoxic.
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Hi Sandy,
First off, Thanks for your reply, I appreciate the time in which you spent on it and all your concerns😎
RE: an actual DX of an immune deficiency, you need to look a bit closer at my OP, as I stated my DX of "Common Variable Immune Deficiency" You are DX.ed via vaccination challenges and SERM levels of all antibodies. NO insurance company in the world would cover my weekly Hizentra infusions without the correct testing protocols. And who in their right mind would want to receive a plasma product made from the donated blood of their fellow human beings if not needed? I have never heard of " blood plasma seeking behavior" have you? Just trying to educate you here😎 If you read this posting any further, you will understand those sentiments....as many patients completely give up on trying to educate friends and family about their condition. PTSD and immune deficiencies rank right up there with PTSD and Cancer DX.
A couple of things I need to mention, and did not prior, because it is the sort of information that is on a need to know basis. I have read many of your postings, and you are quite knowledgable on the subject matter, so I will share my "story", as "boring" as it might be for some readers.( keeping in mind many cancer patients have articulated the same concerns on the relationship and family section of this forum, how their families and friends lose interest in their cancer fight, etc.) But you need to fully "understand" the information shared below before you discard my query RE: Iscador.
I am a "early"retired Pharmacologist( Ph.D with years of post- doc work) with 30yrs in the area of dermatological research, much of this time was spent abroad as an expat. I also lived in Germany and Japan as a child due to the auto industry, so I have had the benefit of experiencing many modalities of which are considered "alternative" by US standards, but not so in other first world countries.
I received what was in essence, Iscador whilst living in Germany as a child, abit under a different "brand name" This was due to my constant strep throats and other repeat infections. Whilst living in the US, they gave me a weekly Penicillin shots as a kid. This kept me well, but most likely set up a resistance to certain "L forms" of bacteria....not a good thing and I won't digress any farther. Immune Defiencies were "unknown" at the time....this was well before John Travolta starred in the movie about the Boy with SCID, commonly referred to as the "Boy in the Bubble".
Plain and simple, the Iscador worked better than the Penicillin shots. Flash forward to the early 2001, and I am finally DX.ed with an immune deficiency ( CVID, mentioned above🤔)and start receiving weekly gamma globulin infusions. While this replaces the IgG SERM levels to normal, it has never done a darn thing to raise my WBC count nor, NK cell count, both of which are needed to fight neoplastic cells. This is due to several things, but one of which is the fact that we still have "holes" in our immune systems, and henceforth are always fighting off routine infectious exposures that are part and parcel of living daily life! I also deal with a compliment deficiency, which contributes further in adding insult to injury.
Those of us with PIDD's( Primary Immune Deficiency Disease, CVID in yours truly🙄 ) are at increased risk for cancer, typically Lymphoma and Leukemia, but there is a large cohort of BC amoungst the female population, a much higher percentage than the healthy age adjusted female population....and we tend to develop more aggressive and rarer forms of cancer. Different types of sarcomas seem to like to rear their ugly head in the CVID population. Three gene loci, so far, have been found for PIDD, more are expected. Average age of the first cancer is mid- 50's, even with replacement IgG therapy.
As far as the Neurlasta query, yes, typically used for cancer, but there has been off label usage., usually the patient has to "cough up" the monies. At 15K a shot, probably not going to happen, unless I can get some financial aid from the pharmaceutical company. But, with my history and DX....you never know.
As a side note, two things held back the simple, simple lumpectomy surgery to remove my giant arze 9CMPhyllodes Tumor in 2009, WBC count was low, as was the RBC count at that time. I was able to obtain Procrit for the low RBC issue, and proceed with the surgery. The immunologist infused a large dose of IVIG the day prior to surgery, and the typical pre-surgical ABX was administered.
So, yes...I have a true germ-line immune compromised situation at hand. Not just in "word only" but in nasty bodily deeds.
As far as being "high risk" my maternal aunt had both BC and Ovarian cancer before age 40. Amazingly, she survived both and just recently passed on in her 90's. It should be noted that she was a Ph.D level researcher ( rare for females of her generation) who worked several times with Dr. James Watson on the genome. My mother passed from Ovarian cancer. Maternal grandmother had BC, survived, and passed away from the flu many years later. Maternal Grandfather passed from gastric cancer in his early 50's. Two male cousins on the maternal side lost their lives to gastric prior to the age of 50. Two female cousins, also on the maternal side,have had early BC, DCIS and LCIS in their twenties. There is a "Cancer in the maternal germ- line".
I yet again see my genetist at MDA in November, to pursue testing for the PALB1 and CHD1 genes( my memory of the correct gene loci' may be off here, but I imagine that you are aware of the two genes of which I speak🤓) as the PALB gene has presented in a Candian cousin. This gene is known to present in those of certain French- Canadian ancestry, especially those who originate from the Quebec region. That. Would. Be .The. Maternal. Side of the family!
Regarding ALH, and a PMX, as I stated in my OP, the risks regarding my other health issues and taking on chemo and rads is well known. In a recent issue of "Up-to Date" medical journal, July 2016, there was a posting regarding new guidelines in treatment of those with immune deficiencies, especially CVID. I was able to obtain this journal thru the NCI. Essentially advising to withhold radiation testing unless absolutely necessary, and use of radiation in cancer therapy judiciously.We are unable to repair the DNA damage done to our healthy cells via radiation....which leaves us open to more cancer......there is a much higher rate of Angiosarcomas in the BC/ CVID female population. Dosages and treatment modalities need to be recalibrated due to the condition.
So, between family history, and my poor odds with fighting cancer...it was suggested by the genetist and my immunologist to consider a PMX on my terms( meaning that I can prepare my health to the best of my ability) versus taking on cancer when it decides to "show up to the party" Ditto nixing the other lady bites "down below". BS stays "quiet" on the subject, as he stated that he is in "over his head"on this issue.
On a final note....we have not even touched upon neoplasms and infectious triggers of oncogenes, such as EBV, Mycoplasmas, CMV, HHV-6 and all those other ugly stealth pathogens. All of which I aquired, and was treated for prior to the CVID DX. No, I do not have AIDS or HIV!!!
A. Martin Lerner was my ID in Michigan and Dr. Ali Massimi was my cardiologist at Texas Heart Institute while living in Houston Texas...both, sadly, passed away last year. I mention this because I remember reading that your DH is a cardiologist? Well, if it wasn't for Lerner, I would be busy 6 ft under "pushing daisies up" right now, as he caught, and treated my myocarditis back in 1994. I don't even want to tell you what my pathogen "load" was at the time..... Dr. Massimi took over my case and worked w/Lerner if I had any further heart/infectious issues, thank the lord he "understood" my situation.
So,no, I am NOT looking for Iscador to "treat, or prevent cancer".,,, but to aid in boosting my innate immune response....it did in the past, and it could help now.
As Gilda Radner said "It's always something" and in my case....it ain't purdy 😏 So I'll take what help I can get.
As an aside, no, I am not someone who deals in "attention seeking behavioral" either......that's why I am posting on an Anonymous forum, as I am quite embarrassed by my health situation. Like most cancer patients, we quite often look just fine.
And this certainly is not my first Rodeo health wise, nor is it the first time that I have had someone "question" my health statistics and facts. Oh, ho hum....so much for the famous term, " Never complain, never explain"...even if you "were a member of the medical establishment ".
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Have you read up on Maitake D extract? There was some research done about 5 years ago in the US. First on breast cancer patients, as a phase 1 trial to determine optimum dosage, then secondly on myodisplastic patients to test efficacy in boosting certain parameters of the immune system. At the very least, as far as neutrophils counts, my wife has used mushrooms and mushroom extracts and boosted her neutrophil count from 1.3 to 3.05 on only a matter of weeks. There are cautions, as high dosages can depress certain parameters of the immune system. Optimal dosage used in the myodisplastic patients was around 6mg/kg body weight. Read up on it on pubmed and see what you think.
My wife did try mistletoe extract. She was given it intravenously by her naturopath. He used excalating dosages. Unfortunately she got a very adverse reaction and has to discontinue. I'm not sure about intravenous as opposed to subcutateous being a better idea. She got a terrible rash on her scalp that went away when she discontinued the misteltoe.
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Fleur, just in case you haven't tried this: Do a search on Iscador as a key word, then go to the bottom of the page and click on "Sort by Relevancy". You will find threads where Iscador is discussed, and some members who have used it.
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Thanks, Timothy for the suggestion regarding medicinal mushrooms. I remember using them during my first "known" official fight with EBV back in the early 90's. I cannot recall how it effected my CBC and other counts, but I do recall avoiding the flu that year. This was before anti-vitals were on the market. A. Martin Lerner, MD created Valtrex, and I was in his early study on the drug. It rid me of the EBV, and has always worked if I ever relapsed. Since starting the gamma globulins in 2004, I have only had one relapse, and the Valtrex worked once again, and worked "quickly".
I will pursue your suggestion and research further😎 Regarding the mushrooms and BC
As far as the Iscador, I only received the shots as a child, although I have had trouble finding a good specialist who does not want to infuse the extract via IV route.I have no interest in that, and want to pursue the injections. I, as a child, received three shots a week...small shots in the sub-q area of the stomach. I can assume that the dosage will change but not the dosing schedule, as this is one of the main protocols still in use in Germany.
Sorry that you wife had the reaction to the extract...not fun! I am itching as I read about it! Wondering if the shots, started slowly and built up slowly might have met with a better outcome? Well, no matter, as she is probably "done" with that therapy.
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Hi Shetland Pony...nice avatar pic!
Thanks for the suggestion🙂😇 I did pursue the search option regarding Iscador, and only a few threads popped up.....I used the "search for Iscador, Misteltoe extract " in any and all sections and postings. I am "aware" that this is a forum that mainly pursues the standard, consensus based protocols in BC. Although the there is some "evidence based" research on Iscador in certain disease states. I AM one of those disease states, and had previous use of the product.......
Posted the query to see what others knew, or had experienced here in the US.....if I was currently in Switzerland, I would not need to go "fact finding".....I would just pursue a clinic and inquire. But DH job is in Texas currently, and I am not up to long haul travel "alone".
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I am using a mistletoe from Europe called Abnoba Viscum - Fraxini 20mg. I have so much energy with this!! My naturopath uses this and Iscador and Helixor. I flew out to Tuscon AZ to meet with him and he called a script in for me. I will use it at longs as it makes me feel good!! There is a lady on Inspire that has been using it for years. You might want to check out the Inspire.com website and do a search on Iscador.
Good Luck!
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Thanks, rpoole...just saw your reply.
I start treatment next week....I reached out to the "Believe Big" support group....nice, helpful people
Thanks for mentioning the Aspire group....not much information here regarding the therapy. Although I found some threads regarding the therapy in the stage IV section of this forum...I did not feel comfortable bringingup those old threads and asking questions since I am not part of that group.
I am a member of a huge immune deficiency support group, and found out that many members use this as a complementary treatment to the gamma globulins that we regularly receive. My immunologist actually thought it was a great idea, as the standard of care for my situation did not correct my low WBC count or my Natural Killer cell count.
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I have not posted on this forum in some time.....removed some of my postings when a local colleague recognized my story......anyway, I felt that I needed to bring this thread back "up-to-date" and share my experience with Helixor mistletoe therapy.
I started this a few weeks before the recent Phyllodes/ILC DX........which was successfully treated with MX and immediate recon after I started the Helixor injections.....luckily I was able to get up to a rather high dose pretty quickly...50ml. I am heading to 100ml the maximum dosage.
So it was not for cancer treatment, nor for future cancer prevention per see, but for low WBC and NK cell counts, as this therapy is known to raise those counts. I have a immune deficiency for which I use gamma globulin weekly.
Within three months my WBC counts went from 2.9 to 8.3 ......sorry, but that is just amazing to me! Only treatment modality that proved this increase before were Colony Stimulators, such as Neurlasta, Neupogen. These, at least for me, come with some rather inconvenient side effects....pain, and brain fog....both of which can be addressed via use of Claritin and Ultram.
No problems with Ultram, but the Claritin antihistamine lowers my blood pressure to the low 90's. I cannot do my job, which requires a bit of intellect, when I am suffering from brain fog due to low BPressure! Claritin D does not work for the bone pain which comes part and parcel with colony stimulators.
So I have had good luck with the mistletoe therapy, so far....cannot comment on it's usage in Cancer per see, as I would have been eligible for immunotherapy, if I had needed it.
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fleur de lis - thank you very much. i am tip toeing towards the mistletoe treatment, as it were. the main issue right now is that i can't get mistletoe.
>Z<
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I rhink you can get it in northern europe someplace, I forget exactly. expensve
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helixor in germany. this isn't the place I remembered but that was 34 years ago when I first heard about it
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My doctor wants me on iscador. He's very particular about the brand. It's not sold in the US, but I could get it on amazon when I visit canada, which happens occasionally.
>Z<
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hi all!
question: sounds like Iscador work better intravenously, is it worth taking orally? Can you order it for home injection?
thanks for any info!
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It works pretty well as an sub-cutaneous injection, but not orally. I am still trying to figure out how to get it. If anyone has a lead how to get Iscador, please PM me.
>Z<
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You need a doctor's prescription and monitoring. My onc didn't recommend it when I asked him about it many years ago but said it acts by causing an allergic reaction. So caution needed. I would only do it with someone very experienced. I have allergies already so not keen on adding another. My mistletoe is natural birch pollen and company, which make me miserable enough. The antihistamines I take supposedly might block a histamine pathway some cancer cells use. My onc is happy to prescribe antihistamines. Weleda USA, the manufacturer of Iscador, might provide it to your doctor directly. I have read of recalls of Iscador so the doctor has to monitor this as well.
According to the above, 50 doctors in the US are allowed to prescribe mistletoe for certain cases.
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