CancerCompass message board discussion started by shabs on 11/7/2007 http://www.cancercompass.com/message-board/message/all,17749,0.htm Wed, 20 Aug 2008 00:00:00 GMT Wed, 20 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I figured I should try and poll as many opinions as possible...I recently had surgery to remove a melanoma, margins were clean, all scans were clean, sentinel node biopsy was clean. The melanoma was desmoplastic, which is a rare form -- they generally grow very deep but don't spread very often. But, it was definitely deep: 8 mm. The surgeon did not feel that I needed to proceed with interfeuron treatments, because the benefits would be slim. My oncologist does seem to feel that I should do treatment...It seems to make a 3-5% reduction in recurrence, which does not seem huge to me. I'm questioning whether treatment is worth it, considering the side effects and the turmoil it would cause (especially because even going through surgery and everything, I never felt sickly or like someone with a disease, which would certainly not be the case under treatment) but don't want to be greedy seeing as how fortunate things have turned out so far.Anybody have thoughts on this? I appreciate it.   shabs Wed, 07 Nov 2007 00:00:00 GMT If it would reduce the chances of it coming back i sure would consider it. having just finished 2 rounds of chemo with different kinds of meds. its not that bad. the only bad reaction i had was with the radiation it gave me diahreaha (dont mind the spelling) and i became allergic to one of the chemos. the hair loss is not too bad the loss of my eye lashes was the worst. i didnt realise that they keep the dust out of your eyes. weigh carefully if its inconvienient or if its something you just really dont want to do. shirley b Wed, 07 Nov 2007 00:00:00 GMT Sorry, I forgot to mention this in the previous message. My husband has Gastro Intestinal Melanoma. Gail W. 1anxiouswife Thu, 08 Nov 2007 00:00:00 GMT Hi, Just saw your message. My husband was recently diagnosed with myelofibrosis, due to enlarged spleen and liver, and a recent bleeding episode in thigh, due to a muscle strain. Even though his blood tests are normal, and there's no JAK2 evidence (something you must have to have this disease), the doctors say he has it.We're faced with taking a chemotherapy pill, hydrocyucea or simply waiting to see how things progress. The doctors are split. The side effects of the pill are the same as chemo, we felt it could trigger some effects as well. The doctors even though they're split, agreed to wait and see.Waiting is so so so hard to do. Shouldn't we do something knowing what's on the horizon? But right now, he's just in perfect health, working full time, enjoying life, and the thought of being sick now, because of a chemo pill, just put us over the edge.Your message just read our hearts. You've been through a lot, and now that decision comes up. I'm sure you're tossed what to do, and there's no easier answer.Please keep in touch, and let me know how you are. Have you contacted the City of Hope website about this? They seem to be on the advance with many kinds of cancer.My best to you and your family. very hopeful Thu, 08 Nov 2007 00:00:00 GMT It seems that you are in a position similar to a multitude of 1st-time, cancer survivors. You had a cancer, now it's "cured" and you are declared "cancer-free" - but oncologists always recommend that last little 3%-5% be treated. This is where the expertise and experience of your oncologist becomes critical.As a care-giver and and familiar with cancer treatment in general from an observational position, my recommendation is:1) Practice a healthy life-style - using all the recommended tools - exercise, diet (low animal fat intake), weight control, etc. etc.2) Get regular and frequent check-ups from a cancer-oriented facility. Blood analysis, CT-Scans, MRI, PT-SCans - whatever is needed. Insurance will cover it and it gives a series of 'bench-marks' for the experts to refer to. Pay close attention to results, select a treatment source that you trust COMPLETELY. By 'cancer oriented', I mean a facility such as Cancer Treatment Centers of America or similar to it. This is where you get the best advice, cutting edge technology, and cancer-experienced specialists.Agreeing to oncological treatment now - without expert consultations collectivly agreeing is taking a chance on extremely invasive measures upsetting your life and quality of life. Chemotherapy and how it is is delivered to an individual patient is extremely touchy and unpredictable as to severity of side-effects. It should only be prescribed and administered by the most experienced technician with literally thousands of patients to his credit.Play it safe and adopt a wait-and-see time period with multiple, frequent check-ups from the best and most eperienced facility availabel to you - and today there are many. If you have to travel, don't hesitate, just do it.I recommend Cancer Treatment Centers of America. They saved our sanity, quality of life, and literally, my wife's life after her inital oncologist gave her 6 mos. to live. CTCA continues watching her like a hawk with full check-ups every 90 days - for awhile, at least.800-FOR-HELP 24/7Good Luck and God Bless You davea888 Thu, 08 Nov 2007 00:00:00 GMT You might be interested to know that there is a vaccine for melanoma under development that should be approved for humans within several months. It is designed to prevent recurrence and is given after successful surgery. It is currently approved for use in dogs and will soon be available to humans. I don't know the name of it, but found out about it from the Cancer Research Institute in NYC. Maybe you could  search for an article about it on their website, which is www.cancerresearch.org  Ovcasurvivor Thu, 08 Nov 2007 00:00:00 GMT As they keep tell me everyone is different. I did have the dirreaha thing with some of the chemo, I didn't lose my hair, I did my eye lashes that sucked but if you can false one came in handy. I'm on new chemo now and feeling much better, went to Paris. I don't know what your chemo will be like but I'm the type of person that will try anything once, if I like it I'll do it again well I really don't like it but its not bad. I know its a big question to answer and I hope you find your poll helpful. Good luck Sparkplug Thu, 08 Nov 2007 00:00:00 GMT Hi, read your message under mine, and wanted to say that you really spoke to me. I don't know if you were answering my message or not. But I take your advice to seek expertise treatment seriously. We live near Buffalo, NY, where there's the Cancer Treatment Centers you spoke of. I'll speak with my husband, and we'll get over there for a second opinion. Thanks for your advice, whether or not you meant it for me, it will help plenty of people who are struggling with these decisions. Both of our doctors say, take the chemo or wait, there's really no difference, something I find very difficult to do. Thanks again, you have helped me. --------------------------------I'm repeating what I said before, so please ignore this if you've read it: My husband was recently diagnosed with myelofibrosis, due to enlarged spleen and liver, and a recent bleeding episode in thigh, due to a muscle strain. Even though his blood tests are normal, and there's no JAK2 evidence (something you must have to have this disease), the doctors say he has it.We're faced with taking a chemotherapy pill, hydrocyucea or simply waiting to see how things progress. The doctors are split. The side effects of the pill are the same as chemo, we felt it could trigger some effects as well. The doctors even though they're split, agreed to wait and see.Waiting is so so so hard to do. Shouldn't we do something knowing what's on the horizon? But right now, he's just in perfect health, working full time, enjoying life, and the thought of being sick now, because of a chemo pill, just put us over the edge. very hopeful Fri, 09 Nov 2007 00:00:00 GMT Do the Interferon as your Oncologist suggests. Cancer is microscopic and the purpose of the Chemo is to eliminate that which can't be seen.Some people go through the Interferon without severe side affects. Babyzack Fri, 09 Nov 2007 00:00:00 GMT while you are waiting to make your decision why not try some preventive measures other than meds?I do a lot of cancer research on the Web and try to come up with alternatives as I can not take many mess. I am allergic to so many and also if it has ten side effects I get all twenty of them. I had a bi-lateral mastectomy two years ago and are not on any meds - just anti toxin foods - so far I am clear. Also during my research I discoverd that eggplant is a great anti toxin for melenoma and I suggested it to my grandson who had a hugh blob removed from the side of his forehead, he has been eating it and also drinking V 8 Fusion which is loaded ith anti toxins and no meds and is doing fine - I am not suggesting you do this but am suggesting you consider it -- can't hurt even if you do go with the meds. Toni R Tonir24 Fri, 09 Nov 2007 00:00:00 GMT Hi Tonir24Thanks. Fortunately, my husband loves eggplant, as well as healthy foods, broccoli, whole wheat products and the like. He also loves cooking, so I'll suggest we have eggplant this weekend, as well as having it more often. How do you cook your eggplant? He makes it with cheese, as well as putting it into sauces. Unfortunately, he also loves the not too good foods, bacon, ham, and anything with fat. Those must go, and he's trying to do that, in favor of what you're saying. Do you take any vitamins as well? This weekend, he'll be starting on Vitamina B12. I'll let you know how that goes after he takes a blood test in a few weeks from now.Last night I contacted the Cancer Treatment Center in Buffalo, New York. They have a chat line that operates 24/7, unfortunately they said they don't treat myelofibrosis until it becomes cancer... something I think this person was wrong in saying, so I'm calling again today.There's something really wrong with that. Isn't there something that can be done? I know it's a rare disease, but goodness sakes, isn't there research going on somewhere?Thanks for your input Tonir. Hope things are going well for you and yours. very hopeful Fri, 09 Nov 2007 00:00:00 GMT Son (26) has just completed first week of daily interferon treatment. Also desmoplastic...though his had spread to his lymph nodes. Symptoms have been rough but bearable from his accounts. Severe chills and extreme tiredness the main culprits. Already started losing hair and was unable to have fridays treatment due to very low white cell count needing blood transfusion. It really depends on your support network. If you are fit and healthy I would seriously look at it. cinders Fri, 09 Nov 2007 00:00:00 GMT I dip the eggplant in milk (so the crumbs will stick) and then Italian flavored crumbs (bought at the store) and lightly fry it. You can add any other seasonings you like - but the cheese sounds good, but make it low fat cheese. I also buy it for lunch at the Olive Garden restuarant and they serve it with a marina sauce - but any other sauce would also be good or just sprinkle cheese on it before putting it on the plate after frying it, as eggplant really does not have too much flavor by itself. If I can find the item where I read it I will let you know but I research ALL OTHER ALTERNATIVES TO MEDS. There is another lady in Georgia that I communicate with through this website that is also doing everything other than meds. I also eat lots of broccoli and all green vegs, very little meat other than chicken, pork chops (the other white meat) and fish - very litle beef - because of the fat and loads of harmful chemicals and hormones. I also try to have salmon once a week as it is also very high in antioxidants They say that you should have 5 - 8 servings of fruits and vegs a day -- (who has time to do that) instead I drink V-8 Fusion which an 8 oz. glass per day gives one their daily supply of fruits and vegs - so 2 glasses a day really gives me the 5 to 8 servings and it is loaded with antioxidants and also tastes good and (and I eat less as I am not as hungry) It comes in the "light" version so there is half the sugar - it is a little expensive in the regular grocery store, but I go to Wal Mart and load up as it is half the price there. Pomegranates are the number 1 and blueberries are the number 2 foods in antioxidants - but I do not like the taste of pomegranates so I buy pomegranate and blueberry mix capsules from my vitamin company and take those daily. ginger is also very high A company called Allergan produces a product called Prevage MD which has been shown to be the most powerful antioxidant available in a skin care product today. Go on the internet and pull up "doctor yourself" or something like that and it has so many helpful suggestions (google it and you will probably find it) I am at work now so I do not have it handy here Anyway keep in touch and let me know if anything of this is of use to you If you want to e mailme direct you can at --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--good luck Tonir24 Fri, 09 Nov 2007 00:00:00 GMT Hi. I, too, had a melanoma that was 7 mm deep. It was all removed and everything was clean as is yours. No treatment was recommended for me at that time, just 3 month checkups with blood tests and x-rays. That was 14 years ago. My dermatoligist feels after 10 years and no sign of further cancer, it was caught in time. As one of your other replys, I too look for alternative "treatments" since kemo is so destructive to good cells and organs in your body as well as contaminated ones. I am currently using astralagus (a herb from Asia), cinnamon capsule,garlic capsule, ground flax seed, 1 baby aspirin, and 2 ounces of mangosteen juice daily.Most of these are for building up and maintaining your immune system. I understand that noni juice and goji juice are also good. My advice would be to keep having 3 month checkups and to use kemo as a last resort. There is a lot to be said about the "natural" approach that I am using, and you will NOT get much support for it from any doctor since their license can be revolked if they recommend it. Good luck to you,and you can't be harmed by trying some of the things I have mentioned. Howard H. Fri, 09 Nov 2007 00:00:00 GMT Thanks Tonir,You make eggplant the way we do. All your suggestions sound right, and pretty much the way my husband eats. I'll print this out and purchase the V8 fusion for him tomorrow.Without meds, it seems we need to know the foods, vitamins and whatever else we should be having.While email address aren't allowed on this message board, for reasons that I can understand. I sent you a private reply, please feel free to contact me anytime.I'll let you know how things turn out. Can't thank you enough. very hopeful Sat, 10 Nov 2007 00:00:00 GMT Yes.My husband had melanoma on the back of his neck. It was removed and we had three different opinions and concurred not to do any treatment.Four years and 9 months later he had enlarged lympth nodes and had a radical neck disection.With good advice he began a 5 year immunotherapy w/ BCG injections in 15 sites on his back. He also would take 10 grams of Vitamin C per day. Side effects from the vitamins were some kidney stones (1) time. Otherwise he did very well and it has been 28 years. Good Luck to you. Bizz C Mon, 12 Nov 2007 00:00:00 GMT Here is a website with some really good information for anyone wishing to work alternatively to reverse and control their cancer. It covers diet and supplements etc http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=52 Shemay Mon, 12 Nov 2007 00:00:00 GMT I think the 3-5% reduction may be incorrect. My surgeon and my oncologist both told me that interferon reduces the risk by 30%. They also both told me that the initial high dose interferon treatment, which lasts 4 weeks, is the most effective. 4 weeks is not a very long time, especially if it reduces your risk of recurrence. Also, everyone reacts differently and you may not have severe side effects. I completed the 4 weeks of high dose interferon and it was very difficult but I never missed a dose. After that, the low dose was easy (in comparison) and I stayed on that for an additional 11 months. I would tell you to try the interferon and see how you react. If you can get through the first 4 weeks, you will have done a lot to reduce your risk. Lisa1234 Mon, 12 Nov 2007 00:00:00 GMT Hi and congrats!I was treated for lymphoma and have been "clear" for 3 1/2 yrs. During a routine test for the lymphoma, breast cancer was found. I did the surgery but chose to do no more "preventive care".My advice to you is to make sure you understand your situation and your options. I feel an oncologist knows more than a surgeon regarding cancer. It's their specialty! Then go with your gut. Remember, everyone is well-meaning but ultimately it is YOU who must suffer the consequences or celebrate the joy. And, no one has a crystal ball. When you are at peace with a decision, it is the right one for you.All the best! mamat984 Tue, 13 Nov 2007 00:00:00 GMT I felt compelled to respond to your message. I just finished up the 4 week Interferon treatment. I too had a deep melanoma which was located on my scalp. It was ulcerated and I ignored it too long. I was fortunaet that the PET scan came back negative and my lymph nodes were also clear. My Oncologists gave me the info. on Interferon and left it up to me. I prayed about it and decided to proceed with the treatment. I entered a clinical trial at Emory that only includes the 4 weeks of high dose Interferon. I will not be doing the 11 months of follow up shots.Just to let you know, I was VERY tired. (I had to go to downtown Atlanta 5 days a week for 4 weeks and that in itself will wear you out.) I mostly experienced tiredness and achiness. I only had one evening where I experienced a fever and chills. I made sure I drank water all the time and this really seemed to help. You may also experience a metallic taste in your mouth. It isn't pleasant, but I dealt with it. Everyone has to do what is best for them. I was fortunate to have a wonderful family support system. They took turns taking me to my treatments. I also have 2 boys, 12 & 16, they and my husband made sure that I was able to get the rest that I needed after treatment. Rest is also very important.I hope that this helps you in some way. I felt like ANY percentage that it might not come back was worth it. I also felt like 4 weeks to feel bad in the total sum of my whole life was a small time to deal with in the big picture. Mustangmama Tue, 13 Nov 2007 00:00:00 GMT My friend had a mole removed in 2002 - was told it was MM but that he'd be fine and needed no treatment. In 2006 he found two lumps - MM of his lymph nodes - over 80 were invaded by tumour.  Following surgery and interferon, he found more lumps in 2007 - now has two brain tumours and the situation is very grave indeed.  It breaks my heart whenever I think of what is to happen - he is 29.    Would treatment in 2002 have made a difference? God forbid that if one of my children had a removal and an "all clear" I'd not rest until they'd had some treatment.    gillianfn Fri, 16 Nov 2007 00:00:00 GMT  On 11/7/2007 shabs wrote:I figured I should try and poll as many opinions as possible...I recently had surgery to remove a melanoma, margins were clean, all scans were clean, sentinel node biopsy was clean. The melanoma was desmoplastic, which is a rare form -- they generally grow very deep but don't spread very often. But, it was definitely deep: 8 mm. The surgeon did not feel that I needed to proceed with interfeuron treatments, because the benefits would be slim. My oncologist does seem to feel that I should do treatment...It seems to make a 3-5% reduction in recurrence, which does not seem huge to me. I'm questioning whether treatment is worth it, considering the side effects and the turmoil it would cause (especially because even going through surgery and everything, I never felt sickly or like someone with a disease, which would certainly not be the case under treatment) but don't want to be greedy seeing as how fortunate things have turned out so far.Anybody have thoughts on this? I appreciate it. hi    my husband had stage 4 melanoma in 2001 in  a mole on his back they cut out 6 inches around the area and felt that they had gotten it all and the margins were clear--he had no other treatment--he has had no problems since then with melonama--but he did find a 3 inch tumor on his right kidney in 2003 and took that out but that proved to be renal cell carcinoma and not melanoma and he has since in 2006 had the rcc come back in the lymph nodes but once again biospy showed rcc not melonoma --so for Jim it worked good and they did get all his melanoma--good luck to you these drugs are all so potent that if you don't have to take them it is better not too the side effects are so many--good luck  and may god bless. sue  harley boy Sat, 17 Nov 2007 00:00:00 GMT Hi --Just read your post.  I'd do the treatment.I posted something (two things -- you can check both out) about my mom's desmoplastic melanoma.  I don't want to alarm you but if I were you, judging from my mom's situation, I'd do some sort of treatment.  She's doing leukine.  Unfortunately, she didn't start treatment until they discovered it had spread to her lymph nodes, much to everyone's great consternation. Be proactive.  Get some sort of immunotherapy!You may be one of the lucky ones but to hold onto that luck, get some kind of treatment!    Tulip Sun, 18 Nov 2007 00:00:00 GMT My husband had a melanoma on his right forearm.  When it was core biopsied, they said it was 1.5 mm.  However, his oncologist told us that there is no way of telling if the biopsy recovered the deepest part of the disease.  (It was a very large mole.)  He had the melanoma removed, mapping and two lymph nodes removed on 11/05/07.  Everything tested clear.  Our oncologist decided not to follow up with any treatment.  However, we are scheduled for full tests every 4 months, for two years.  Then full tests every six months for three years (for a total of 5 years).  And then once a year for the rest of his life.  We were also educated in what to watch for on his skin.  We are also going to visit his dermatologist (who did the initial biopsy) once a month (for two years) just to double check, peace of mind.  Due to his line of work, he has a full physical every two years.  No one ever mentioned anything about the large black mole on his arm.  He happened to go to my doctor for acid reflux, and she sent him directly to the dermatologist that day.   That was when this nightmare began.  Our decision not to do chemo, is based on keeping a vigilant watch on any and all changes on his body.  Not waiting to see what happens, but watching to make sure nothing does.  Will it be the correct road to take?  We don't know.  We can only do the best we can, and continue our prayers for his health.     Alibi Thu, 29 Nov 2007 00:00:00 GMT