Holistic/alternative approach choriocarcinoma

[Mike'swife]

My husband is on his second week of cycle 3. This cycle has been hard with increased fatigue and just not him self, and withdrawn. His father has been pushing alternative treatments from the beginning, but seems to be more and more persistent. He has gone to most MD appointments as well as the second opinion at UCLA, which is a center of excellence here in SoCal. Today he told me that Mike looks pretty tired and beat and that he doesn't need to take this route of treatment. He said his goal is the same as mine doesn't know why wouldn't be opened to try everything. He has brought us several books and publications. Some being a hydrogen IV, clinics in Tijuana Mex, and today's book Knockout with Suzanne Sumers. I of course want to do everything possible as well and my husband is not opened to holistic / alternative medicine so my father in law continues to pressure me to convince him. I'm in the medical field so I have my reservations about alternative care, but now I'm so stressed I don't know what to do. Mike's TC is pure chorio so I know it can be tough to treat. He is worried we are just not aggressive enough in treatment and because the PET/CT did not show much improvement the chemo might not be appropriate. Stress and more stress (I even had a Melt down at work during a hospice presentation, never thought I would ever do that).

[cbvance]

I think the choice for alternative treatments are totally up to the person dealing with the cancer. I respect others choice to do so, but it is unwise when there is a solid and effective pathway to a cure using proven medical science.

My uncle has stage 4 Colon cancer and the doctor's have said he is terminal. They want to do chemo but say that it will not improve the outcome, he has chosen to go alternative and has already visited a clinic in Mexico. In his case I might agree with that route, but I believe TC is different.

Granted Chorio is the most virulent form of this disease but some on this board have beaten it and they did so by following lessons learned and solid medical evidence.

I will pray for you guys to make the right choice and to beat this disease into oblivion.

Live Strong!

[Nut of Mordor]

I agree with cbvance: I'd go for alternative treatments ONLY if an expert (Einhorn or similars) says chemo gives no more hope.

[schemattic]

I may not be a complete atheist, but I'm certainly against most religious beliefs and practises. Never in my life did I impose to anyone what I believe nor did I told people how they should live their lives. This because my wife's family is evangelical, and since the begining of my ordeal they tried to push to more natural ailments and, of course, convert me to the righteous path of christianity.. Every time I had to do, say, a surgery, they would advise me against, and the same with every treatment, saying they know this and that person that got cured by faith and some miraculous fruit or whatever.This has been one of the hardest things on my life, mostly because I keep telling them not to try to convert me to anything and each time a treatment won't work they strike again. I'm a science guy and I feel complete disrespect towards my beliefs. And when your frail like us after all the treatments, its really hard to take it all.

I say this because your husband may not only not want to be advised in such way, but also because it affects him negatively. It's hard enough to face the randomness and ruthlessness of this disease as it is, and that's what you should be telling your father in law. Respect his beliefs.

[cbvance]

@Eduardo: I am a believer in Christ but as you have said, I have never imposed my faith upon others, I do believe in miracles but also I believe that modern medicine is a miracle unto itself and that God uses doctors and medicine to cure, cancer drugs are all naturally derived; some from plants, others from metals and still others from bacterias but all are part of God's creation and the knowledge doctor's have gleaned through trial and error at the expense of many valiant cancer fighters are all God given.

That's how I choose to look at this, I am sorry that you have been pressured and made to feel insignificant in your own beliefs, If you choose to believe purely in science apart from the hand of God that is your right and I respect it.

Again, I say that the choice to use the cancer drugs, surgeries, or alternatives such as herbs and other things, or even to do nothing and wait upon a miracle from heaven is the choice of the individual that is directly facing the issue and those around should respect that and not impose their beliefs from fear or otherwise.

It is somewhat like the story of the person that was offered surgery and refused saying, " I am waiting for a cure from heaven", then was offered cancer drugs and again refused saying, "I am waiting on God to cure me", and then when after death he faces God and asks, "Lord, why didn't you heal me with a miracle from heaven?" and God answers, "I sent you surgeons and gave you access to cancer drugs...why did you refuse?".

[schemattic]

HEy cbvance

My point was that of respect. You're probably aware of most christians approach to non believers, specially in such cases. I cannot, for instance, have a conversation with my wife's mother without having her telling me that I should be turning to god, that I should try this or that plant/fruit, etc. it really bothers me, and I've already told her to stop it because I really have no faith in her beliefs, but she just always finds a way to bring that up.

And I do not want to go in any discussion, but how can you respect the decision of someone refusing all treatments and wait for the hand of God but, as your belief system implies, not respect someone who wishes to die with medical assistance? Wouldn't it be God also providing the tools to prevent an agonizing death? To be honest, I know it is useless to dwell in these questions with people of faith, because if you die is because god wanted so, and if you survive you're his Miracle.

Nontheless, I have the utmost respect for religious people, but it saddens me to see where the world is going with radicals and fanatics jumping the fence each day.

[Rush67]

@Eduardo: I am a believer in Christ but as you have said, I have never imposed my faith upon others, I do believe in miracles but also I believe that modern medicine is a miracle unto itself and that God uses doctors and medicine to cure, cancer drugs are all naturally derived; some from plants, others from metals and still others from bacterias but all are part of God's creation and the knowledge doctor's have gleaned through trial and error at the expense of many valiant cancer fighters are all God given.

Amen, brother!

[Luc]

I’m sure the consensus is to continue with medically proven treatment. I’m sure you’re aware of unintended side effects of alternative treatments that may very well jeopardize primary treatment.

As for convincing your husband, there's no need. I’m sure he’s well educated and confident with his decision right now. Your objective is your husband's health, not your father's satisfaction.

Eduardo, thank you for taking a courageous stance on your view. People sometimes impose their own opinions as a source of comfort to themselves. Sometimes it is out of their own self-interest to justify their feelings and they don't realize it is at the expense of your well being. It's an inadvertent sabotage of your treatment. There's no need for added social challenges to compound a difficult physical condition.

[schemattic]

Eduardo, thank you for taking a courageous stance on your view. People sometimes impose their own opinions as a source of comfort to themselves. Sometimes it is out of their own self-interest to justify their feelings and they don't realize it is at the expense of your well being. It's an inadvertent sabotage of your treatment. There's no need for added social challenges to compound a difficult physical condition.

Well, it does seem that nowadays you have to be corageous to come out as a non believer. We should already have gone over that by now.

[Luc]

I am an atheist. It's a challenge to say the right things with a sensitive subject, be it religion or alternative treatments.

[Scott]

It's a challenge to say the right things with a sensitive subject...

Truer words were never offered!

[davidhanson90]

I sit in the middle, an agnostic. You can't prove or disprove god or a deity so it's better not to worry about it.

Medicine however is not the case and we can measure a treatments success with cold hard facts. If there is no evidence to suggest one treatment works and plenty of evidence that another treatment does then I think it's a no brainer.

As stated, only after established treatments have failed and there are few options left should you explore the others.

@MikesWife you are in a extremely stressfull situation and doubts and fear will be at every turn but do have faith, have faith in the treatments and your husbands determination to beat this disease. Others have done it before so focus only on those and feel free to vent here. We are strangers bought together by chance but we all share a common story and know we are here for you.

[DARDEVIL]

Hi

First, as Nut of Mordor said: unless if an expert like Dr Einhorn advices you a palliative approach.....then do what you have to do. By the way, I don t know what others think, but a world famous expert advice is welcome on this case, isn't it ? I ve read somewhere that Dr Einhorn has dealt with more than 3000 patients. High chance your medical team is already on the top of this.... Check it.
Second, alternative options may be followed at tbe same time chemo treatment is going on....WITH A MEDICAL VALIDATION : food, psy coaching, spiritual involvment, physical exercices

All the best

[hbr777]

It is everyone's option to whatever treatment he feels is fit. Regardless of religion, I am evidence-based; what is proven to work, objectively. In this case, what is proven is chemo, for most patients. Unless it doesn't do the job, I would never stray from the proven cure unless the proven cure didn't work.

I wonder if your father in law can provide something that is evidenced based vis a vis treatment? If he can't, you can (loads of studies, we can help you print them off) and give them to him.

Maybe if you tell him that he is adding to your stress, maybe he would cool it a bit?

[Aegean]

Pure chorio can be extremely very aggressive. Einhorn has had more success than everyone else and it is his protocols that are followed. This is definitely a case that he should be consulting on.

[julesTO]

Shaun followed standard treatment protocol AND worked with a naturopath. But the naturopath was involved for the purpose of getting him through treatment as comfortably as possible, not to "cure" him. And for what it's worth, Shaun looked and felt pretty damn good for guy who went through 4 rounds of chemo and a 6 hour RPLND. The choice doesn't have to be one or the other. You can integrate both modalities in such a way that make standard treatments just as effective and more tolerable, and I believe we will see more and more of this as time goes on. We ran everything by our oncologist, and he was OK with the total plan.

I would never suggest abandoning standard treatment - especially with a relatively treatable cancer. And I'd be wary of alternative treatments claiming to 'cure' cancer. But sometimes you need all the support you can get.

As for your father-in-law, I have an idea: There is a man named Ralph Moss who's made it his mission to critically evaluate alternative cancer treatments around the world. In fact, I think he's mentioned in Suzanne Sommers's book. In any case, you can let you FIL know that we spoke to Ralph Moss about Shaun's Stage III case (after a lecture he held in Toronto), and Ralph -- the expert on alternative treatments, the author of a book called Questioning Chemotherapy -- looked us straight in the eye and said, "Chemo is hands down the best treatment you can choose for testicular cancer." If your FIL is as into alternative health as he sounds, he's likely heard of Mr. Moss and hopefully this feedback will go a long way.

Good luck with whatever you and your husband decide.

[Mike'swife]

Thank you for all the insight. I finally got the nerve to tell my FIL that his research was not only stressing Mike, but myself as well. I haven't spoken to him since so we'll see. Mike got readmitted today for back pain so hopefully it will not revert back to doubting western medicine.

[Mike'swife]

Life is stressful to say the least. As Mike was having some test away from his hospital room my FIL took the opportunity to bring up how damaging chemo is and that we should have done a chemo compatibility test first before we started treatment. WHAT! (I now know he read that in the Suzanne Sumers book). Since he is potentially having a Bleo side effect, we should have him tested. Unfortunately I was having such an emotional day, I reacted. I told him both wanted to do everything possible, but we needed data to support his treatment recommendations and not from the doctors/people writing these books or data, but cold hard facts. Of course he wanted me to talk to some of these Drs patients (really I work full time, have 2 teen girls, and a husband with a rare cancer, chores, and now call patients) Needless to say I lost it and told him that I will only follow his son's wishes which is chemo and that he will potentially need high doses chemo and we were going to do it. He said no, we need to try other things before it's too late. At that point Mike's mom left the room, which of course I then felt like a total douche bag for losing my cool. (specially since she has helped so much) I'm a mother and I too would want to try everything, but it seems he doesn't want to give western medicine a chance. I later apologized to my mother in law for being argumentative but I have to stand up for my beliefs which is chemo and that I'm not opposed to doing some things, but stopping chemo is not one of those. She understood. Tuesday I overheard my FIL on the phone with some alternative people and when he told them to email that he couldn't commit right now they hung up on him. My mother in law didn't visit, hope she is not upset.

[Aegletes]

I'm sorry to read that you have all this family nonsense going on on top of what you're already dealing with. Anyone going through or supporting someone going through cancer treatment hardly needs the second-guessing and the quackery-peddling that you seem to be subjected to by your in-laws. And from where I'm sitting, you have absolutely nothing to apologize for. When it comes to standard treatment protocols for testicular cancer vs these so-called alternatives, it's not a matter of belief. It's a matter of cold hard evidence.

[cbvance]

Stand your ground and don't feel guilty. It is Mike's decision and his alone. Thank goodness he has a supportive wife willing to stand by his side. The FIL probably means well but he must understand that you both are following a known path to cure for this type of cancer. There are so many charlatans and snake oil sales men in the alternative medicine crowd that it would be very easy to follow the wrong advice.

My uncle has chosen to refuse chemo for treatment of Stage 4 Colon cancer and is going the natural remedy path, but that is only because chemo offers him no hope and while he has encouraged me to check these cures out not once has he pressured me to eschew modern science or any of the other options available, and in my case the type TC I have is much less aggressive than Mike's. Mike needs to hit this thing hard and fast with every chemotherapy or radiation regimen available, In my opinion that's his best chance for remission.

[CancerSux]

Life is stressful to say the least.

Mike'swife, I want to reiterate Alex's and cbvance's comments that you have absolutely nothing to feel sorry or guilty about. You are both standing by and supporting your husband's decision, and doing the hands-down best thing to try and save his life.

I am a cancer researcher - every day I look for new and better and safer ways to combat the beast. And the University here is the national premiere institute for natural products as medicine ... I would be GLAD to be put out of work by someone finding a magic cure, or some other regimen that is less toxic that has the same efficacy as chemo does. Unfortunately I am in no danger of losing my job anytime soon.

Your FIL can quote Suzanne Sommers (did I miss where she got her DO, MD, PharmD or PhD?) to his hearts content, or talk about Gershon's coffee enemas to 'rid the body of toxins', but he needs to do it away from you and Mike. Mike is fighting for his life, and in a fierce battle. You are right to be honest about the chance of HDC or something else to follow BEP, with chorio you have to fight fast and hard. You and Mike do not need a side fight with your in-laws, and if it takes you yelling at them to get it, hopefully they will. Someday they can be glad that they fought with you and are sitting next to you and Mike, rather than bullying you into doing something that not only lacks cold hard evidence, but actually has mounds of data AGAINST it in the more 'treatable' cancers.

Last thing, and I will end my likely nonsensical soap box standing ... refer your FIL to Steve Jobs - he eschewed modern medicine when first diagnosed with pancreatic cancer, and went with holistic approaches, and regretted that decision when he let his cancer get so advanced that no options were left.

If I can help (if you think it will matter) by providing scientific papers about the treatments and alternates, let me know and I will do a search and send some data.

Best wishes,
Tracy

p.s. you know what they call 'alternative medicine' when it's been shown to work well? Just MEDICINE

[Smartie]

I'd like to add my voice to the "you have nothing at all to apologise for" camp. You are absolutely doing the right thing. This "alternative" mumbo-jumbo is dangerous and damaging. Frankly, it is something that people believe because they have a need to believe something. It has nothing to do with reality.

Members of my family urged me to take an alternative "remedy" when I was having chemo in order to boost my immune system. Thankfully, I ignored their advice on the grounds that, although well meaning, they had no idea what they were talking about. My oncologist later confirmed that the suggested preparation could have rendered my chemo less effective.

I understand how hard it is when faced with this situation with Mike's family. Relationships can be repaired and rebuilt later - for now it's right to concentrate on your husband's situation.

Given the extent of his disease, I agree that you need an expert on the case, if you don't have one already.

[Kat]

I know that it can be very hard to deal with the family situations that arise during the cancer part of your life. As everyone else has stated, the most important thing is your husband's treatment and health. While the ideas of alternative treatments can be tempting, there are "protocols" for a reason--they work.
That said---I don't think there is any reasoning with people who want to push you or your husband into alternative treatments. People have a tendency to become very upset and even more entrenched in their beliefs during situations such as this. There is not going to be any changing of your FIL's mind. And that's okay. It's not your responsibility, or your husband's, to get your FIL to believe in or approve of your husband's treatment. And that's okay!!! Your responsibility isn't to make your extended family happy, it's to help your husband get through this disease. I found that a lot of the unsolicited advice from family members, no matter how well-meaning, really got to me, and I snapped a fair amount of times, too. But, the best way of "handling" them, I found, was to ignore them. Let them say whatever they want to say, and say, "ok, but...no." If that is how they want to choose to treat THEMSELVES, then so be it, but that is not what your husband is going to do, and it is not their job to make choices for him.
When it got too much for me or my husband to take, we merely excluded them from the process. We wouldn't answer the phone, we wouldn't answer the door, etc. Sometimes, I'd just deal with them all by email, so I could measure my responses a bit more. It's easier to deal with when you're not in the moment. When my husband was hospitalized for his RPLND, his hyper-religious aunt and uncle came over with a contingent of strangers from their church, and it was a very inappropriate time for them to do so, AND we'd told them not to come. We merely asked the hospital staff to tell them they had to leave, so that we didn't have to engage in it at all. I find it very helpful to find someone who can kind of be a third-party enforcer, so the responsibility to get rid of crazy crap wasn't my problem alone. Feel free to ignore this---just a thought.
I'm really sorry you're having to deal with this, and I very much feel for the position that you are in.
Best wishes,

[Mike'swife]

Thank you everyone for your kind encouraging words. I heard back from Dr. Einhorn and he suggested VIP and to see him after he is done with chemo unless his tumor markers have increased. I feel better about not second guessing our decision, thanks. Things are so much more meaningful coming from people that are or have gone through similar situations. I'm glad I came across this site.

[HouTex]

So much good advice from smart folks who have fought similar battles. Be strong and stand together with your husband.

Sad comic note: The holistic folks hung up on your FIL when he couldn't 'commit' at that moment?!?!! That doesn't seem very holistic, bad vibs abound...

[Rush67]

I believe in divine healing, and that God is above all doctors. However, I also believe that you should go with what has been proven to work, especially in this stage of the game. An alternative medicine approach is definately not an option. Your father in law's behavior is irrational, and borderline insane.

I'm glad that you contacted Dr. Einhorn. You're definately in good hands.

[ryder]

I am so sorry you and your husband are going through this. I lost my husband three years ago to pure Chiro, you are doing the right thing, the right thing is what you and your husband choose to do. Does that make sense? We went with modern medicine all the way and although it didn't cure my husband, I know it was the best chance he had and I would do it again. When we exhausted all our options, we did start seeing a natural path, not to be cured, but to help with quaility of life.

My husband finished high dose chemo in May, we started on the natural path and he had so much energy and strength, he built me and the kids a gigantic shed all by himself. Who does that after just finishing HDC?? We took the kids on a trip to the mountains for a week only one month before he passed away, we camped we quaded we truly lived for that short time, he was active and happy and I truly believe that we have to thank the natural path for a lot of that. He worked not only with Kevins body but his mind. Do I think alternative medicine can cure you?? NO! but I do think it can help you. I think where it greatly needs to be used is as a prevenative measure to help avoid getting cancer and other such diseases.

I guess what I am trying to say is to you Mikes wife, keep doing what you are doing, you are in the best of hands, you are doing the right thing, your inlaws should respect that and back away, it's fine for them to express their point of view, he is their son, but then there is a time where they need to back off and just be there for you both. YOu need their love and strength, not their disapproval.

I am also trying to say is alternative medicine is not about witch doctors, quacks, although there are some out there, there are also some quacky modern medicine doctors out there too. Alternative medicine can be used for many things, how could natural products be at all bad for you? Again I want to stress I don't believe they can cure your cancer, but I do believe used in conjunction with modern medicine, they can be really powerful.

I am here if you ever need someone to chat with, I unfortunetly know that road too well that you are travelling, so feel free Mike's wife to contact me any time. Best wishes, I am glad Dr. E is involved, he kept me calm most of the time with his emails and phone calls and that was to Canada, he is a very special special man.

[Sister_Army]

Hi Mike'sWife,
Hope your husband is doing ok. My brother has the same type of cancer. It just had the nerve to get into his brain but with aggressive radiation the docs are confident they will zap it out of there. My brother has been taking a lot of IP6. He can't find any studies about it but even the doctors notice that he looks strong and healthy even with the cancer.

http://www.lewrockwell.com/sardi/sardi39.html

Also he does a form of Qi Chong that used for cancer treatment in the far east.

http://www.qigongchinesehealth.com/walking_qigong

My brother Michael was able to find a lot on that but I don't know exactly what the links are. If you want more info please let me know or email me at ameskins11 at the google mail. I tried to be sneaky but I'm sure you get the point! My brother would love to share with a fellow cancer brother.

Amy

[CancerSux]

There are studies, including clinical trials, on IP6 (with inositol), but mainly they show an improved quality of life and less neutropenia, but no change in overall outcome.