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  • #16
    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.
    Husband Shaun diagnosed March 2010. AFP 4571, HCG 3340.
    6cm x 6cm x 8cm retroperitoneal mass + 1cm nodule in right lung.
    Stage IIIb, Intermediate Risk.
    Left I/O March 9/10: 75% EC, 20% Teratoma, 5% Yolk Sac + Seminoma.
    3xBEP + 1xEP March 15 - May 21/10: markers normal.
    Bilateral RPLND July 28/10: 9.5 x 7 x 4.5cm mass, teratoma only.
    Chylous Ascites Aug/Sep.
    November 2012 All Clear
    Continuously monitoring 0.9 x 1.7cm omental nodule (possible fat necrosis)

    www.teamshaun.wordpress.com

    Comment


    • #17
      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.
      3/2/12 sciatic pain, ER visit-multiple lung mets, admitted. Multiple lung mets, RP masses 4.6x5.8 & 7.8x8.4, spleen 4.6, liver 2.5, 4 brain lesions (3 Cyberknife 3/8/12 DX pure Chorio with RP bx. 3/9/12 started BEPx4. HCG pre-chemo 330,000-after 3/15 759,672 -3/21 272,206 -3/28 46,486 -4/5 11,326 -4/18 2423- 5/4 871 -5/23 176 -5/30 105 -6/6 97 -6/27 29 -7/6 16 -7/1 20 -7/18 129 -7/25 3122, -8/4 1105, -8/10 122, -8/15 37, -8/22 7, 8/30 3!! -9/5 8.4 start of HDC -9/26 <2, 10/3 <2, 10/4 2nd HDC

      Comment


      • #18
        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.
        3/2/12 sciatic pain, ER visit-multiple lung mets, admitted. Multiple lung mets, RP masses 4.6x5.8 & 7.8x8.4, spleen 4.6, liver 2.5, 4 brain lesions (3 Cyberknife 3/8/12 DX pure Chorio with RP bx. 3/9/12 started BEPx4. HCG pre-chemo 330,000-after 3/15 759,672 -3/21 272,206 -3/28 46,486 -4/5 11,326 -4/18 2423- 5/4 871 -5/23 176 -5/30 105 -6/6 97 -6/27 29 -7/6 16 -7/1 20 -7/18 129 -7/25 3122, -8/4 1105, -8/10 122, -8/15 37, -8/22 7, 8/30 3!! -9/5 8.4 start of HDC -9/26 <2, 10/3 <2, 10/4 2nd HDC

        Comment


        • #19
          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.
          TC1: 1996, right orchiectomy, seminoma stage I 3.5 cm mass, radiation therapy (peri-aortic & pelvic 27.3 Gy)
          TC2: 2008, left orchiectomy, seminoma stage IA 5 cm mass, left & right prostheses, AndroGel TRT, surveillance at MSKCC

          Comment


          • #20
            It's Mike's call

            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.
            03/16/2012 Ultrasound Diagnosis TC (Tumor 5.5 cm)
            03/22/2012 Right I/O Pre-IO markers normal
            03/28/2012 Pathology Classic pure Seminoma, pT1/N?/M0/S0
            04/05/2012 CT Scan--Clear? (single 1.2 cm node External iliac)
            05/03/2012 PET Scan CLEAR. All markers Normal.
            05/04/2012 1 X CARBOPLATIN INFUSION (Chemo Lite)
            09/02/2012 CT All Clear! (1 cm External Illiac Node)
            04/04/2013 CT All Clear!

            Comment


            • #21
              Originally posted by Mike'swife View Post
              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
              Tracy
              Cancer pharmacologist, caregiver blog here

              Wife to Kel, dx 12/30/11 Stage IIIc (poor) embyronal, AFP 13700, 10x11 cm retroperitoneal mass, 1 cm^2 lung met
              Left I/O 12/31/10.
              4xBEP 1-4/11, AFP=22, 5*7 RP mass, tx failed
              1.5 x VeIP 5-6/11; tx failed, AFP/b-hCG rising
              Salvage RPLND @Indy 6/29/11, metastatic mixed germ cell tumor with yolk sac, seminoma and teratoma
              Remission! AFP steady since 9/2011; 2+ years ALL CLEAR

              Comment


              • #22
                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.
                Nick

                Embryonal Carcinoma; Seminoma. Marker negative.
                August 2001: Right I/O .
                August - December 2001: Surveillance .
                December 2001: Relapse - Stage III. Mets in lymph nodes and lung.
                December 2001 - March 2002: 3xBEP .
                Complications: Neutropaenic sepsis during cycles 1 & 3. I/V antibiotics and isolation.

                March 2012 - Ten years since finishing chemo.

                Survivorship Blog is here

                Comment


                • #23
                  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,
                  Kat
                  sigpic_______________________________________________
                  Caregiver
                  DX 5/15/09
                  Left orchiectomy 5/22/09
                  60% embryonal, 40% seminoma, w/ VI, LI, T2 (CS-IB)
                  CTs clear, X-rays clear, blood markers normal
                  L-RPLND 7/14/09, San Antonio
                  3 nodes positive, 100% embryonal, N1 (PS-IIA)
                  2 rounds BEP August 24, 2009, Austin
                  Enlarged lymph nodes Oct 09, Dec 09, Jan 10, Apr 10
                  All clear 10/01/10

                  Comment


                  • #24
                    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.
                    3/2/12 sciatic pain, ER visit-multiple lung mets, admitted. Multiple lung mets, RP masses 4.6x5.8 & 7.8x8.4, spleen 4.6, liver 2.5, 4 brain lesions (3 Cyberknife 3/8/12 DX pure Chorio with RP bx. 3/9/12 started BEPx4. HCG pre-chemo 330,000-after 3/15 759,672 -3/21 272,206 -3/28 46,486 -4/5 11,326 -4/18 2423- 5/4 871 -5/23 176 -5/30 105 -6/6 97 -6/27 29 -7/6 16 -7/1 20 -7/18 129 -7/25 3122, -8/4 1105, -8/10 122, -8/15 37, -8/22 7, 8/30 3!! -9/5 8.4 start of HDC -9/26 <2, 10/3 <2, 10/4 2nd HDC

                    Comment


                    • #25
                      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...

                      Comment


                      • #26
                        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.
                        Jan 2000 Left I/O
                        Surveillance
                        Dec 2011 cancer diagnosed in right testicle, and lymph node, followed by I/O
                        Pathology report 100% pure seminoma
                        March 5 2012 started chemo 4xEP
                        May 11, 2012 Finished Chemo.
                        October 29, 2012 All Clear.

                        Comment


                        • #27
                          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.
                          Dawn Ann (Ryder)
                          Caregiver
                          Husband diagnosed Oct 2008 Pure choriocarcinoma., HCG 425000, 4xBEP, Left orchiectomy, marker did not normalize, 1xICE, Found 3 Tumours in Brain and more in Lungs and spinal area, radiation on brain and back, 2xTIP, 2 rounds HDC with Stemcell transplant, markers still did not normalize, lost the love of my life, my best friend and soul mate on September 23, 2009.

                          Comment


                          • #28
                            Ip6

                            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

                            Comment


                            • #29
                              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.
                              Tracy
                              Cancer pharmacologist, caregiver blog here

                              Wife to Kel, dx 12/30/11 Stage IIIc (poor) embyronal, AFP 13700, 10x11 cm retroperitoneal mass, 1 cm^2 lung met
                              Left I/O 12/31/10.
                              4xBEP 1-4/11, AFP=22, 5*7 RP mass, tx failed
                              1.5 x VeIP 5-6/11; tx failed, AFP/b-hCG rising
                              Salvage RPLND @Indy 6/29/11, metastatic mixed germ cell tumor with yolk sac, seminoma and teratoma
                              Remission! AFP steady since 9/2011; 2+ years ALL CLEAR

                              Comment

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