Aa
Aa
A
A
A
Close
213398 tn?1202670474

Can we send messages to other members?

does anyone know how we can send a private message to other members on forums?
21 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Hi,
I have heard the joke about the life boats before too.  With the CFS I also bumped into plenty of doctors and suggestions, I had to screen or walk away from.

Your suggestion on the cinnamon for cholestrol sounds good.  I'd heard about it for high blood pressure, and I haven't seen any studies yet.  But I like the idea much more than Lipotor.  I posted a question about my dad and his pancreas problems.  If you have any suggestions I'd love to hear them.  

I wish I could say something more about your situation with your sister, but it's just such a frustrating thing.

Take care, - Curls
Helpful - 0
Avatar universal
Thanks for your kind words.  The analogy to the old man, the lottery ticket and God is a good one.  My nephew (my brother's son) told us of a similar one he heard about a person in a boat lost out at sea who kept asking God for a miracle to save him, and there was a ship that passed by, which the person on the boat totally ignored.  When he asked God again for a miracle, God said, "What do you think I sent the ship for?"  I think it comes down to this:  That we are expected to use the brains that God gave us and accept the reality of situations and take advantage of the resources that are available to us on this earth.  I believe that even if there is a God (and, sorry, I don't mean to insult you or anyone else who might feel *sure* that there is), He would want us to use the brains he gave us and the available resources here on earth to help ourselves.  I don't believe that surgery, chemo, radiation and drugs were "sent here from the devil"; I believe if anyone had anything to do with the advent of these things that save lives, God did.  These treatments are not perfect answers to all cancer and they have their down-side for sure, but they do save lives every day.  Also, even if God is capable of performing a miracle and saving my sister's life, that doesn't mean he is going to do it.  My sister believes that God is telling her He will heal her, but look at all the others who have believed the same thing, and they ended up dead.  I believe in prayer as an adjunct, not as a substitute for intelligence and common sense.  For instance, even if you believe in God and his ability to perform miracles, you wouldn't go stand in the middle of the street and ask God to save you from oncoming cars just because he is capable of doing that.  Although my sister didn't actively seek out cancer, in my mind what she is doing is not all that different from that.  

Regarding medicine and there being problems with it and not trusting it blindly, I definitely know that side as well.  If anyone has a right not to trust doctors it is me (not my sister).  I spent 13 years trying to convince numerous doctors I had something was wrong with me neurologically and otherwise, and was written off as a psychosomatic nutcase until I got dxd with severe gastroparesis last year and made a trip up to Mayo and was dxd with autonomic neuropathy.  So I definitely know the shortcomings of doctors and western medicine--tests don't always show the true picture, sometimes the right tests just aren't being done, and the biggest problem of all--the arrogance of physicians and their inability to believe what the patient is telling them.  This arrogance seems to unduly be applied to female patients and those with any hint of psychiatic illness (past depression, anxiety, etc.).  Medicine should not be a field that small, uninquiring and closed minds go into, but unfortunately it is.    

Anyway, thanks again, and hope you are well.  
Helpful - 0
Avatar universal
That all sounds so hard and so frustrating.  I'm sure you love your sister very very much...and what's she's doing does fall in the category of suicide, which generally lives the survivors with a lot of anger from it.  

Her reasoning reminds me of an old (yiddish) joke, that works well (without the accent too.)  This religious spiritual man wants to win the lottery and prays every day to G-d.  Every day with a full heart he says all the wonderful things he'll do for others with the money and even the personally rewarding things, and asks Gd for this.  This goes on for many years, asking and praying to win.  As he goes older he asks gd, why he has never answered him on this prayer since he is a good person who lives a good life and wants to do good with the money.  And he prays some more.  Until finally one day a voice comes down and gd answers.  ....I've been hearing you for years Moshe, but Moshe could you do something for me?  Would you buy a ticket already!  Faith is good, and miracles do happen, but you also have to buy a ticket in this life.  

I'd have to agree that there are problems with medicine and reasons not to trust it blindly, but it is so sad that your brother in law doesn't understand how to evalute information enough to be an advocate instead of an obstacle.  It sounds like your brother-in-law has some sort of issue about his wife dieing and is handling it by controlling and isolating her, instead of letting everyone help deal with it and support her.  I really feel for you.  I hope you can find healing for yourself as you deal with.
Helpful - 0
Avatar universal
I just saw it done.  -:)) on another thread. you can send your email addy spelling out dots, dashes, at, and such like, provided you want everyone who reads that thread to have it. (?) Example - michael at abc dot com.  k?
Helpful - 0
Avatar universal
No you cannot private message (PM) any other users on this board, unfortunatley.  They only recently added the capability of having new replies at the top compared to archiving them.  Not sure what message board system is used (or if it's custom made), but it's way behind what is available nowadays.
Helpful - 0
Avatar universal
I have no idea how that paragraph got separated??????  Oh well. -:)
Helpful - 0
Avatar universal
I think the gist of all this is "Check it out - check it out - check it out".  I'm as guilty as the next person in not always doing that, especially if the info. is given to me by someone I trust.  Sad, but true.  

Hallelujah Acres is one that is an excellent example.  I even have their "cookbook", which is actually quite good as for the recipes. It was referred by a friend.  Even bought some of their products. -:(

As for being a Christian, which I am proud to say that I am and try to show, tho' I fail miserably at times, we need to be one with common sense.  Now don't get me wrong, I'm not condemning your sister.   She will believe the way that she wants until  - whenever. I also believe that God can and does heal. In fact I have been on the healing end a couple of times.  But He also disciplines, teaches, & loves us and sometimes uses our "trials" to do all of those things and being a  believer is not a "magic pill" for a healing, or  anything else.  

That's my sermon for the day. -:)

You sound like I would like to be with all the "natural stuff".  I guess I'm just not as committed as I should be and then when the spouse is only part time "natural/organic"  it's back to the pork and shell fish, etc.  That's my excuse, anyway. -:)  I do use the natural cleaners as much as possible and I'm starting to change all my cookware to stainless steal, eventho' I like my cast iron. Trumeric and ginger for AI, eh?  Hadn't heard that yet.  Guess I'll have to "check it out" lol.

Hubby's wanting brkfst -  ttyl

tmblwd



I wish, for her sake that she would have the masectomy, if that is what the Drs. want her to do.  I've been there and done that, and no it was not my first choice, but it was a choice that needed to be made and I believe has made me stronger (in some ways).  All we can do for her, Annie, is pray for her.  
Helpful - 0
Avatar universal
Liz:  I had read above that you also had breast cancer and I am glad you are approaching the five-year mark and hope you make it well beyond (I also read you have Crohn's to contend with).  I know the five-year point after diagnosis is considered crucial and, although it is not a definite clearance (as unfortunately you know in the case of your friends), it is a point after which there is more assurance and hope that you are a true survivor.  It sounds like you are doing everything right and I hope you never have a recurrence of your cancer.    

Curls:  I've heard that fibromyalgia can be a very painful condition and I know it's associated with chronic fatigue syndrome, too, sometimes, so I don't doubt it can be debilitating at times.  I know it is often dismissed by doctors who don't know a whole lot about it and fail to realize it is a very real condition.  On the other hand, sometimes patients are conveniently labeled as having fibromyalgia/chronic fatigue syndrome by doctors who can't figure out what they really have--usually some autoimmune disease as yet undxd.

I had read about the Gerson diet, too.  It is really unethical the claims these people make.  My sister was following the "Hallelujah" diet (author--the Reverend George Malkmus--the one who claimed he had colon cancer when he didn't) and even went down to the "Hallelujah Clinic" which is part of the Oasis of Hope Hospital run by some Mexican oncologists (real MDs but very questionable ethics) across the border from San Diego in Mexico.  Thankfully she did not do the laetrile treatments while there as she originally planned.  Curls:  The reason she is doing what she is is twofold:  She is an evangelical Christian and apparently really believes God is going to heal her, but she also has a definite bias against doctors and conventional medicine, and her husband is the force behind that.  She has done nothing to proactively learn about her disease as far as I know, and her husband has given her misinformation regarding bioidentical hormones, how surgery (the mastectomy she refused to have) could spread her cancer, etc., how "toxic" drugs like tamoxifen are (which is not even chemo, but anti-hormone therapy--as you know, Liz).  And I am not in any way minimizing the toxicity of chemo and radiation treatments (I would have questions and fears, too, if I faced these treatemetns).  He has always had a "bug" up his behind about conventional medicine and thinks he knows more than the doctors do about how to treat my sister's breast CA.  He printed up some article and gave it to my parents regarding the mastectomy vs. no mastectomy debate.  It was a legitimate article/research, but it only applied to women who had KNOWN metastatic disease, debating whether or not the breast/primary should be removed or if it could cause more spread during the surgery.  It did NOT apply to women with non-metastatic disease.  It is this sort of thing we have been up against.  Since she will not allow any dialogue about her cancer, we can not try to talk/reason with her about this stuff, and it is now two years this month since her dx--and still no treatment.  I rarely see her even though she lives just 20 miles from me.  I was told about a year and a half ago that she didn't want me or my mother to come to her house any more.  She has seven children, some of whom are still young.  But you are right, you can't make people listen to reason--and ultimately it is their choice.  If she were a child doing what she is doing we could try to get a court order to stop her, but she isn't a child, she is an adult, however misguided.  If she had metastatic disease at the time of dx and didn't want to put herself through chemo, etc., I wouldn't necessarily agree with her, as it could potentially add years to her life, but I would support that choice.  But she almost certainly had stage I disease and what she is doing is tanatamount to committing suicide.

Tumbleweed:  Again, I'm sorry for sounding so harsh.  Also, I am not at all against complementary medicine--if I gave that impression.  I believe in doing what one can do for oneself with regards to diet.  Obviously what we put (or don't put) in our bodies has to be important.  I try to live and eat as "green" as I can afford--eat mostly organic, try not to use toxic household products, don't cook with Teflon, don't heat or freeze plastic and use as little of plastic products as possible, use a lot of cinnamon, turmeric, and ginger in my diet (some studies show first is as effective as some of the statin drugs in controlling cholesterol--and also effective in regulating blood sugar levels, and the latter two have shown very good anti-inlammatory properties--good for the heart/vessels, autoimmune diseases, etc.).  So, I do believe in doing whatever one can--as long as the research supports it--to help yourself.  

Helpful - 0
Avatar universal
Well, I guess we can all be gullible at least once, right?  I suppose it is like trying to believe that there are no "bad people" out there praying on those that are truly ill.  Ya'll have opened my eyes so I think it was worth "being told". -:).   Ya know, this is what these boards are for, right? Exchange of info., both good and bad and being able to have people that have "been there" help us weed out (gently) the bad.

God bless you all as we just keep learning.

tmblwd
Helpful - 0
Avatar universal
You don't need to be jewish to have the Brca genes.  They run in higher percentage in ashk jewish populations like 10%, but aren't restricted to them.  They were found there initially because it's an easy gene population to study.  Some googling on it might give you good info on who it can impact.  Besides, for all you know, you've got some Jewish history in your family that's no longer relevant.  

I asked an Arab speaker (he used to part of a terrorist group and was repudiating that life), if anyone had commented that his hand motions and expressions were like a Rabbi.  He smiled a big smile and said that there had been a lot of forced conversion way back when, and his Arab last name (extended family/clan tree name) would indicate that he might just have some Jewish blood in him.  So, yay never know.  Just to be funny about it, my sister married a german/irish/english/mutt non-Jewish person.  The kids have his blond hair and blue eyes which is of course a recessive gene.  So my brother-in-law likes to tease that there must have been some hanky panky some place in our family history while living in eastern europe.  
Helpful - 0
Avatar universal
I'm so sorry to hear what you and your sister are going through.  I don't know the reasons for her decision, but it must be so hard on you and your family to know that she didn't use medical care for herself.  If you do ever understand maybe you can post it, so other people know what's motivating their family members.

I have a chronic illness CFS (which can be a lot worse than the name implies including bedridden, but it's not cancer of course), and it's often to get flooded with alternative cures.  I'm very cautious and ask miracules all sorts of questions and am continuously stunned at the full story.  ...One person was so much better using a type of accupt treatment.  Turned out she hadn't been treated yet, just had one verbal appointment and stopped taking a pile of meds she'd been using.

Quackwatch.com has been useful.  I find though they sometimes go overboard in the other direction and dismiss things completely that are mildly useful for some people.  I am glad they are there though, if it stops just one person from believing alternatives are a substitute for good medical care, and not an occasional adjuct (such as adding vitamins to one's diet).  After enough bad experiences where I had been saying "it can't hurt to try", I finally developed a new saying "if it's powerful enough to help, then it's powerful enough to hurt - use caution".

I love the analysis that none of your body cells can live in an alkaline body.  It's what I'll say to myself the next time one of these ads has me taking a look...

All the best at healing and coping, for yourself and you sister, and your family.
Helpful - 0
Avatar universal
Oh, how I agree with you 100%.  If a carrot juice diet could "cure" cancer, then none of us would get recurrences. I have had many well meaning friends suggest various quack diets,supplements, alternative therapies, but having had Crohn's for some 37 yrs, and seen many hospital dieticians, I only take advice from my gastro, my breast surgeon and Oncologist.Only last week I heard that two of my friends have recurrence of bc - one dx 12 yrs ago, the other 5 yrs ago. I am 4 and a half yrs from dx, and now very nervous about a recurrence, but feel that I did everything my doctors advised - a lumpectomy, then total axillary removal, FEC chemo and rads. Now taking hormonal therapy to block oestrogen, even though I had a hysterectomy in 1991.

Although I live in England, we do get satellite tv. and I have recently watched a couple of programmes on the Crime and Investigation channel relating to non-medically trained "doctors" in the US, who had correspondence type qualifications and have fleeced terminal cancer patients out of thousands of dollars. Most patients died anyway. Some of these "doctors" were prosecuted, others fled to Mexico or other South American countries, where they continued to practice their pernicious remedies. I have a friend in Florida whose husband had terminal lung cancer, and one of their friends recommended the Gerson diet. They flew to San Diego for his treatment by one of these quacks - having to eat only huge quantities of vegetable juices, and on his second day there had to be taken into the local hospital as an emergency. They stabilised him enough to be able to get a private flight back to Florida and he died a month later. He would have died anyway, but probably not as quickly if he hadn't been to this clinic. And, this was only last year. I don't know if my friend reported the clinic to the appropriate authorities, I haven't felt able to ask her.

I am truly sorry that your sister will not have allopathic treatment Annie. I am sure she does not want to die, and having cancer myself, just can't understand that kind of attitude. But, I guess we have to respect the fact that people are allowed to make their decisions.

Michael - if you are still reading this thread, I have just made private contact with another poster - we put our e-mail addresses in our posts without the ampersand and used "at". It worked!!

Take care all,
Liz.
Helpful - 0
Avatar universal
I am also sorry for sounding so harsh and angry towards you.   I shouldn't have written my post the way I did; it was a kind of a knee-jerk reaction.

But I do stand by the essence of what I said (just not how I said it).  If the person you knew was able to beat her cancer (regardless of the type of cancer she had), then my guess (based on medical research, not my opinion) is that the reason she did not die is because her cancer either was not metastatic in the first place and had already been treated appropriately either by surgery and/or radiation, and that she really wasn't "sent home to die" at all.  Or, if her cancer had become metastatic, it was limited and only involved a small number of lymph nodes and was effectively treated with surgery and chemo PRIOR to her going home and going on her carrot juice diet.  I don't believe for a minute she had metastatic disease throughout her body (which would be the scenario for someone "sent home to die") and the carrot juice reversed that process and cured her metastatic disease.  

I have read lots of these "testaments" on the internet of "cures" due to carrot juicing, barley green, wheat grass, etc (the list is endless), but I guarantee you that these "success stories" don't give the complete picture.  For instance, the person's diet that my sister follows claims to have been diagnosed with a colon cancer the "size of a baseball," (he couldn't just say a golf ball, of course, he had to make it a baseball), and he claims that his diet (which is free for all, but then he sells all sorts of products to go with it) cured his "colon cancer."  When I researched him on Quackwatch and elsewhere he reluctantly admits when confronted in an interview that he was never actually dxd with colon cancer but instead was TOLD by a chiropractor and nutritionist that he had what they believed was colon cancer.  Since when do chiropractors do colonoscopies?  But this religious quack has thousands of desperate and scared people buying his products (400 dollar juicers, enzyme therapy, stays at his retreat, etc.).  All I can say is that I hope those who prey on the sick--and it is almost always for money even if under another guise--are exposed for their medical quackery and are prosecuted for it.
Helpful - 0
Avatar universal
I am sorry it didn't work for you sister.  The reason that I suggested it is that I personally know a lady that was sent home from the hospital to die because there was nothing else they could do for her.  She chose to do the Carrot juicing and she now takes care of her own farm.  That was 12 years ago and her cancer has not returned.  So maybe it depends on the person and or the cancer.  I truly am sorry about your sister and I forgive you for being angry.

Helpful - 0
Avatar universal
You're right that cancer can't live in an alkaline body--and neither can any of your other cells.    

I know someone who was "willing" to go on a carrot juice diet for her breast cancer for more than a week, and she was not terminal, either, at the time of her diagnosis and actually had a very good prognosis.  She didn't get the mastectomy or go on the anti-hormone therapy--you know, the "conventional" stuff.  She juiced and drank organic carrots all day long.  She went the alternative root and would not listen to anybody--not her doctors, not me-her sister-, not her mother, not even her own brother who is a doctor himself.  

My sister's cancer had grown on the last MRI that she would agree to have--but even that wasn't enough to convince her.  It has been two years since her diagnosis.  Now she is going to die from a disease she did not have to die from.  When the day comes that I have to look in her coffin, I will remember all of the "sage" advice given by people like you on the internet and elsewhere.  Complememtary medicine is *one* thing--walking for your breast cancer, eating healthy organic whole foods, etc., but no g-d d--mn carrot diet is going to shrink a tumor in one's breast or elsewhere!

For information on cancer and acidic/alkaline body state, you can read a good article on Quackwatch.com.  The name says it all.
Helpful - 0
Avatar universal
Hi there - many thanks for your "alternative" dietary suggestions. No go though for me - my gastro won't let me go on anything other than a high protein, low fibre,medium fat diet. I have seen maybe 20+ hospital dieticians since getting Crohn's in 1970 and they all say the same thing: absolutely no supplements or weird juices - just no cereals, low fibre, high protein diet.

I think my Crohn's and breast cancer are related as genetic faults. There have been some research studies done on the Ashkenazi Jewish population from Eastern Europe (many of whom emigrated to Western Europe and America) that showed an exceptionally high proportion of breast cancer and Crohn's in female members of this sect. I don't think I am Jewish. Every gastro I have seen over 37 yrs has always asked me if I am Jewish. What? 5'2", blonde (not out of a bottle) some 112 lbs......
New research has shown defective genes in Crohn's patients, NOD1 and NOD2, and BRCA1 and BRCA2 in breast cancer. Well, I am quite philosophical about it all - especially since my lovely GP said: "Liz, you were dealt a very bad hand when you were born".  Not much I can do about the dealing, but it is in the playing of that hand that matters, and I am a great poker player!

Take care and thanks for posting.
Liz.
Helpful - 0
Avatar universal
Have you ever checked out the weeklong treatment of carrot/veggie juice for Ca?  Cancer cannot live in an alkaline body but the majority of people are not willing to go thru a whole week of the juice only, unless they are terminal.  It can get pretty rough, even if it is for only 1 week.

goji juice tastes gross, Michael. -:))  but you are right with the idea of alternative therapies. I think that I am going to have to start a notebook of what sites I've been to and when, and what the findings were on each.

You both take care and in touch.
Helpful - 0
213398 tn?1202670474
did you do research on cancer and alternative therapies to keep it from coming back?  goji juice, alkaline foods to keep your body from becoming acidic? water ionizer. air filter for your home? sea-vegg tablets? tons of stuff
Helpful - 0
Avatar universal
Hi Michael - thanks for asking. Yes, my breast cancer dx in Jan 2003 is under control. I had 2 surgeries, FEC chemo and 25 rads. Get an annual check up with bc surgeon, but only bi-annual mammos, so going to go privately in the year I don't get one.

Wish the Crohn's was as easy to control as bc. I self inject methotrexate (a cytotoxic chemo drug) once weekly, but it has done devilish things to my bone marrow. My haemoglobin is too low, and red MCV and MCH parameters are grossly enlarged. Gastro is keeping an eye on my monthly bood tests, but I hate to stop it, as there are no real alternatives for me.

Hope you are well.
Liz.
Helpful - 0
213398 tn?1202670474
i'm so sorry about your friend and about what you are going through as well . how is your cancer? is it under control? i hope so. please let me know
Helpful - 0
Avatar universal
Wish I knew Micheal.... I met a wonderfully articulate and great friend through the Crohn's & Colitis Foundation of America site some 4 years ago, when we both had Crohn's disease. Unfortunately, I went on to get breast cancer and my friend to get an inoperable pancreatic tumour. She sadly died this past February at 39 yrs old, leaving two young kids of 11 and 13 yrs old. The CCFA site is now defunct due to legal reasons. If it hadn't been that we could contact each other privately, we would never have had the most wonderful correspondence, that helped both of us. RIP Heather
Liz.
Helpful - 0
Have an Answer?

You are reading content posted in the Gastroenterology Community

Didn't find the answer you were looking for?
Ask a question
Popular Resources
Learn which OTC medications can help relieve your digestive troubles.
Is a gluten-free diet right for you?
Discover common causes of and remedies for heartburn.
This common yet mysterious bowel condition plagues millions of Americans
Don't get burned again. Banish nighttime heartburn with these quick tips
Get answers to your top questions about this pervasive digestive problem