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  • in reply to: new Article #70931
    SoSoCal
    Participant

    Sometimes, it’s helpful to google the doctors and facilities. A simple search of “Rashid Buttar North Carolina” brought up the following:

    https://en.wikipedia.org/wiki/Rashid_Buttar

    http://skepdic.com/buttar.html

    There are more, but these two should give you a flavor of what this quack is about. I agree with Catherine that the melanoma was probably completely removed by the surgery. That this osteopath (not an oncologist) “found” more melanoma should raise an eyebrow or two.

    There are predators out there willing to take advantage of vulnerable people. Sad yet true.

    Blessings…

    in reply to: I’m very scared #70397
    SoSoCal
    Participant

    The initial diagnosis was either in situ or t1a.

    Upon further inspection under the microscope they checked for all those other things that Catherine rightly says to ignore.

    The final diagnosis was in situ. Their in-depth inspection of the lesion showed that since there was no evidence of those other things, the lesion could only be in situ. T1a was no longer considered.

    Radial growth means it was only growing outward, spreading on the top layer of your skin. It had not reached the vertical stage, where the lesion would have grown into the deeper layer of the skin.

    Amen to what Catherine said about your prognosis. Remember to exhale… :)

    in reply to: SLNB on 1b — why wouldn’t they? #70166
    SoSoCal
    Participant

    Something to keep in mind when looking at the survival rates is how old is that information? With all the advances in treatment, those survival rates are changing. I know Catherine (a 20+-year survivor herself) has cautioned that not a lot of attention should be given to those stats. Hopefully she will chime in!

    And, the SLNB is real surgery, with all the usual suspects of potential problems. I had the procedure over six years ago for a 1b, and not sure if the onc would have recommended it today, considering the new guidelines. What I am sure of is that I still deal with issues from having a few nerves clipped under my arm so the doc could get the exact lymph node that lit up. Thankfully, with only two nodes taken, I haven’t had issues with lymphodema, and my physical therapist, who had two taken after her mastectomy, has had issues. Everyone has a different response and story (which is probably why we shouldn’t pay too much attention to those OSR’s).

    We’ve all been down this road of wondering what this diagnosis means for us long term. It’s scary! Something I stumbled on when I was getting weary of the stress this was causing helped. I gave myself a deadline to stop obsessing. This was maybe four months or so after having the surgery in January. I told myself that I had until the end of the year to be scared, to over-think things, and to stress out about melanoma. It worked. If I saw a spot I didn’t like, I called the derm, and understanding darling that he is, he removed it. If I read something on the Internet that took me down yet another rabbit hole, so be it. I indulged myself in freak outs. Until. That “until” made me sane. Sure enough, by the end of the year I had weaned myself off the hamster wheel.

    Give yourself time to freak, Darcy, and give yourself a date to celebrate not freaking out. Plan out the party and open the champagne!

    Blessings,

    Cathy

    in reply to: Vitamin C adverse for melanoma #70168
    SoSoCal
    Participant

    Hey Darcy,

    I followed the link, and saw this article listed in the sidebar of that page, under “We Recommend”

    http://ascopubs.org/doi/full/10.1200/JCO.2015.61.8116

    As to the megadose of vitamin c? This article from the Mayo Clinic is a good guide:

    http://www.mayoclinic.org/drugs-supplements/vitamin-c/evidence/hrb-20060322

    Remember that vitamins and herbs are not regulated. Marketers can make megaclaims that require no scientific back-up. Supplement manufacturers are raking in the money because they are persuasive at making folks believe they “need” these products. They have to be mega-persuasive because often the science is just not there.

    For those of us in the modern world who are not living in poverty, we have access to food that can supply us with the vitamins our bodies require. Of course, that excludes those dealing with a true deficiency.

    And, as I’ve always told my kids, moderation in all things is the key. Mega-anything should raise an eyebrow.

    So, breathe easy. If the vitamin c-melanoma link pans out, the world will know about it.

    Blessings,

    Cathy

    in reply to: Article: Arthritis from Cancer Immunotherapies #70135
    SoSoCal
    Participant

    Doing well, Catherine, thanks for asking.

    More concerned these days with catching non-melanoma skin cancers – more and more pink spots. Hit the trifecta a couple of years ago (melanoma +3 squamous cell +1 basal cell). Autoimmune stuff is mostly under control. Except when it isn’t! :D

    Know you are in my prayers. Be good to yourself…

    in reply to: Post Treatment Migranes-HELP #70026
    SoSoCal
    Participant

    Jenny,

    You might get more responses if you post this in the Stage III board. Most people who check this one out have just been diagnosed with Stage I.

    I am not familiar enough with the effects of your husband’s treatment, so I cannot answer to that.

    Question: Why did you decide not to go on the anti-epilitics for his trigiminal nerve pain? I’m guessing the neurologist suggested either neurontin/gabapentin or lyrica/pregabalin. I have taken both for autoimmune neuropathy (insurance company insisted I switch from the more expensive lyrica to the gabapentin). Understanding your reluctance, I have to say that those drugs changed my life for the better. So much better. Also have a friend with trigiminal nerve pain who has been on lyrica, and she calls it a God send.

    I do hope you get the answers you are looking for regarding the migraine. Your husband is lucky to have you…

    in reply to: What do you make of this!! #69591
    SoSoCal
    Participant

    The stupid. It hurts.

    1. Despite throwing out a lot of “facts,” the only source cited is Joe Mercola. The guy’s a marketer, and not much more. He discovered the power of the internet as a selling machine early on, and has made a fortune from spouting things like “sunscreen causes cancer!” and then selling super-duper tanning beds and a very special Vitamin D supplement. If he were around 150 years ago, he would have been hawking cure-all tonics from a covered wagon.

    2. I note from her other posts that she is anti-vax. ‘Nuf said.

    3. Truly emphasizes the importance of educating the public. Diet will not prevent melanoma. Hopefully this mommy blog does not have a wide reach.

    4. This group does seem to have a belief that nature is healing. Eh. Ebola is natural. So are tornadoes.

    5. Is that our Jenn in the comments section? Haven’t seen her on these boards much recently – glad to see she is out there swinging away at ignorance.

    Peace to everyone here dealing with illness. Because we know this…Sh!t happens. So does disease.

    Cathy

    in reply to: Question re bandaging WLE #69442
    SoSoCal
    Participant

    Hey there,

    Being patient while we heal is Tough. We’re over the worst of it, and just want to get back to life. Too bad those healing tissues don’t pay attention to our wants! 🙄

    Based on my experience, I’d advise you to get yourself into physical therapy. A PT can give you a good idea about what your recovery should look like, and how long it should take you to get full function of your arm back. In addition to teaching you some strengthening exercises, the PT will also do some soft tissue work on the scar, which will help in preventing adhesions.

    Sorry, but that divot is there to stay. That’s where the tumor was, and can be the happy reminder that they dug deep and wide to make sure they got all of that tumor.

    The strange sensations sounds like nerves healing. Eh. Did I mention patience? They certainly do seem to have a mind of their own! What helped me was realizing that each jolt and zing meant I was that much closer to complete healing.

    Hope this helps. When you get frustrated, remember that this will all be in your rear view mirror sooner than you think…

    in reply to: CNLD Recover and Clinical Trial Advice #69328
    SoSoCal
    Participant

    Stacie,

    I can only share my experience and hope that helps.

    Five years ago I had a WLE on right arm, and an axillary SLNB – stage 1b. The oncologist did cut two minor nerves during the SLNB and it took 16 months for those nerves to heal. I did not receive any PT, which in hindsight, was a mistake. I had no clue as to what to expect or how far I should push myself during recovery.

    Fast forward five years. I now deal with autoimmune issues which affect my peripheral nerves (among other various body parts 🙄 ). Earlier this year, over the course of a few months, I was able to do less and less with that right arm, and it felt like the nerves were healing all over again – lots of jolts and strange sensations. It got to the point where I couldn’t hold a blow dryer for more than 30 seconds at a time. Neurologist thought it might be thoracic outlet syndrome and ordered pt. By this time, the physical therapist and I are old friends, as I’ve seen him for multiple issues arising from the AI crap. As soon as he started working on that arm, he diagnosed adhesions from the melanoma surgery.

    My gross analogy is this…think of a raw rump roast of beef. Now, stick a knife in it and twist. What happens where you’re twisting that knife is the adhesions. But watch what happens to the fascia (that thin whitish covering over the meat). The more you twist the knife, the more the fascia torques itself into knots. The pt laughed when I told him this, and said it was actually a good analogy.

    It has taken months of pt to get my arm, shoulder, neck and lats into a good place. Lots of progress! I can now style my hair, but it’s too damn hot to use the blow dryer. I no longer feel the heebie jeebies when someone brushes up against my scar, and much of the hypersensitivity I’ve experienced has cleared up.

    Of course, having neurological issues probably did not help this situation, and my advice is

    Yes! Get the soft tissue work done on the surgical area. Trying to massage it yourself is not the same as having professional hands working it.

    And, do keep in mind that nerves can take quite a while to heal. Allow yourself to feed discouraged at times, but know that each day they are closer to feeling normal.

    Remember to breathe, especially that exhaling part…

    Cathy

    in reply to: NYT articles on immunotherapy #69324
    SoSoCal
    Participant

    Catherine,

    I had the same thought! Seems kinda ironic, right? :?

    in reply to: Update #68154
    SoSoCal
    Participant

    Catherine,

    Why can’t you ask someone to shovel the snow?

    A few things I’ve learned from living through various hard times in my life.

    One is that people do want to help and often cannot get past the standard line of “What can I do to?” They are genuine in wanting to do something to alleviate your distress, but since they don’t know what specifically you need or want, they stay with the generic and vague “something.” Give them that something. They will appreciate being given a specific task as much as you will appreciate having that chore/detail taken off your shoulders.

    People are grateful to have the opportunity to do something specific for you when they feel helpless to do what they most want to do – take away the cause of your pain. It is your gift to them to allow them to help you in any way they can, even if that means shoveling snow (says the girl from So Cal ;) ).

    And, this is one of those situations where you just need to flip it, girl. That is, if your neighbors were going through a life crisis and they asked you to shovel the snow, you’d be running for your shovel. Give them credit for reacting the way you would. I find that flipping the players in a given scenario gives me new perspective.

    Maya Angelou said “When we give cheerfully and accept gratefully, everyone is blessed.”

    This is a time in your life when you will bless those who love you by accepting gratefully…

    Peace,

    Cathy

    in reply to: Melanoma on Nose. Please help!!! #67650
    SoSoCal
    Participant

    Skywalker,

    Glad you found the pm! You’re right – it is not intuitive.

    Also happy to hear you had the surgery. When I didn’t hear back from you, I was hoping that was the case. Please keep us updated on results and your continuing journey.

    Dr J performed the wle and slnb a few years ago. I really do love the guy – straight talker and so approachable. Made me feel like everything was going to be ok, and that was half the mental battle. All is well now.

    I do hope you and Dr. A are a good fit. Your case will certainly be interesting to her.

    Here’s to an uneventful recovery!

    Cathy

    in reply to: Interesting Melanoma Article #67751
    SoSoCal
    Participant

    Since I’m betting no Center for Excellence exists in Cornelius, NC, my skeptic sense started tingling.

    Sure enough, a quick Google search brought this up as the first listing for this center:

    http://www.casewatch.org/civil/buttar/complaint.shtml

    Casewatch is a sub-website for Quack Watch, which is a must for anyone finding a treatment that sounds too good to be true. Not a very pretty site, but the gentleman behind it is thorough in his efforts to expose quacks and quack treatments.

    Then the ultimate skeptic, Orac, posted this. He tends to be a bit snarky, but it’s because he believes so deeply in exposing anyone who preys on desperate people.

    http://scienceblogs.com/insolence/2010/04/07/beware-north-carolina-beware-dr-rashid-b/

    This article/blog is more recent:

    http://skepdic.com/buttar.html

    The article on the race car driver is quite vague. What stage melanoma was he diagnosed with? If it was caught early, perhaps it was in-situ or stage I (no mention of slnb or node involvement), and the surgery was all the treatment he required. Hopefully he will do well for many years to come – highly doubtful that this “cleansing” treatment did anything towards that end.

    Dealing with a couple of chronic conditions, as well as having had a melanoma diagnosis, I’ve learned to question, question, question what I read online or in the press.

    Don’t even get me started on “immune boosting.” What does that mean exactly? There are dozens and dozens of components to our immune systems. When I hear that term I always wonder, well, which of those components is that supposed to boost?? When I wonder that out loud the person who has just been extolling the latest and greatest immune booster looks at me like a deer in the headlights, and has no answer.

    Okay, then. Stepping off my soap box… 🙄

    Cathy

    in reply to: Melanoma on Nose. Please help!!! #67648
    SoSoCal
    Participant

    Skywalker,

    I sent you a personal message – you can access it through the User Control Panel once you’ve logged in.

    Hang in there…

    in reply to: Melanoma on Nose. Please help!!! #67646
    SoSoCal
    Participant

    Skywalker,

    I’m in South County – sounds like maybe you’ve tried down here already?

    Catherine had a good suggestion on your other thread, but from what you’ve said on this thread you’ve already tried everyone in the region.

    Please let me know who you’ve tried in Mission Viejo / Laguna Hills area. My derm partners with his wife who is a Moh’s surgeon, and they partner with a good plastic surgeon (from what I’ve heard). Jakowatz thinks highly of him, so that’s something. If you’d like his name, just let me know.

    Hang in there!

    Cathy

    P.S. Did you pester the folks at UCI?

Viewing 15 posts - 1 through 15 (of 22 total)