Any advice?

[Hebbie]

Hi everyone, it's been a while since I have initiated a post of my own - there are so many new names/faces here (which saddens me), but also many old friends, which is heartwarming.

As you can see from my signature, I'm in my third month of Tarceva. So far, so good on the chemo front. However, I've had some pretty rough issues with plueral effusion pain; I've had the fluid drained 3 times now and they are scheduling the talc procedure to perminately seal off that area. I am SO nervous about this procedure and wanted to reach out to anyone out there who has had success with it. They have told me that it has a high success rate in keeping the fluid from coming back, but it will probably NOT do anything about the pain I seem to have in that area (due to inflamation of the lining of the lung). I feel like I have been in a fog of painkillers for the past year. (Motrin, then Percosets; most recently the Fentanyl patch was tried for about 18 hours and I thought I was going to die before I ripped it off my arm -- with my doctor's consent, of course )

I've also struggled with my weight quite a bit. I've been on a strict macrobiotic diet for two years; however, when starting the chemo, my appetite changed and the food was completely unappealing (I always enjoyed it before). I'm pretty skinny at this point (scary skinny if you ask me!) At this point I have fallen off the macro bandwagen and am just trying to follow a "no sugar/no red meat/no dairy/no white carbs rule and eat like a more-or-less normal person. Of course, this is causing a frenzy in my small macro community -- they are even discussing planning an "intervention" for me and telling me that if I go back to my old way of eating, that will be it for me. Can you imagine the pressure??? It's causing all sorts of unexpected stress and second guessing in my life.....I'd like to hear other people's perspectives on diet/cancer.

After 4 1/2 years of this rollercoaster ride, you would think I would be some sort of a quazi-expert -- but I'm a mess right now!

[raneyf]

Hi Heather,

I don't know about the talc procedure, and I'm sorry you're having pain. I kind of understand about the diet though. I was trying to do the Budwig diet for a few months prior to this (not as long as you were on the Macrobiotic diet I realize). Then I started radiation for a few bone mets and then WBR. Radiation has some effects on me that just make me not hungry and the WBR caused nausea. I dropped 20 lbs in a month, and while I'm not scary skinny, I haven't been so skinny since college. I decided to just eat what I could eat to get through this amount of time, because I wasn't going to let the cancer win this way. I'm like you and still try to avoid the big no-no's for the most part. I'm sorry you're having the problem with the diet community. I just wanted to let you know that I understand where you're coming from.

Raney

[Welthy]

Hi Hebbie,

I'm so sorry you are having pain with the effusion issues.

There ARE many success stories regarding pleurodesis. Tony also has recurring irritation issues and has done 17 thoracenteses. None of his effusions were malignant. He had a great fear of doing the pleurodesis procedure because he didn't want to lose the expansion capabilities of his lungs. He also didn't want a 4-? day hospital stay with a chest tube and didn't want to have anything more invasive than necessary. He now takes indocin 25 mg. twice a day and the effusion on his r-side seems to be settling down. His l-side is loculated, so it can no longer be tapped. Have they considered Pleurx Pleural Catheters for you?

I'm thinking that the last thing you need right now is pressure from a "support" group of fellow macro eaters. Weight does impact survival in lung cancer. That's your ultimate goal, right? Eat what you want and please don't allow other's to put stress on you that isn't needed right now.

Above all, laughter, faith, and an upbeat attitude ARE universal keys to survival. Try to blow off the stress and pressure from those in your macro community.

I wish you the very best and put some meat on your bones girl!!

Warm regards,

Welthy

[Kasey]

Hi there Heather,

I KNOW there have been several posts from members who have had wonderful results with the talc procedure. Of hand I cannot remember who, since it was not really applicable to me at the time. I think one was Cindi O'H.....not entirely sure though. Of course you can do a search and see what turns up. But I feel pretty confident this procedure will help you. And you can't rule out that it COULD also help with the pain issue.

As to diet...........I remember you writing about the macro diet. I sort of was envious because I guess I wasn't motivated enough to try anything out of the ordinary. I do realize that it is a healthy diet. But I also saw your pic from one of your media presentations.....can't quite remember....and thought you looked so very thin. My advice as to diet is simple......eat to be healthy. I eat everything.....just try to be moderate. Yes, I even eat red meat. Now I know there are different schools of thought, but right now I hope you don't let pressure from your diet group hamper your efforts to do all you can to beat back cancer. I'd keep in mind that 'they' are committed as you are, BUT 'they' aren't facing down cancer either.

You are a very bright young lady. Weigh your options for what is BEST for you right NOW. I'm not sure what they mean when they say "that will be it" for you. What DO they mean? I would talk diet with your doc. Maybe there is a nutritionist on board as well. Sounds as if you should have a couple of more pounds on your bones. Will the macrobitoc diet put it on? I don't know.

I wish you continued luck with Tarceva. It has been miraculous for some........hope for you too. And BTW.........sorry you have the need to be back here.

Kasey

[recce101]

Hi, Hebbie, it's nice to "meet" you. I'm one of the newbies that you mention, although it seems like I've been here a good part of my life!

You asked a couple of tough questions, and I doubt if there are any clear answers. I had a talc pleurodesis during my exploratory thoracotomy last August 31, but it was largely unsuccessful since the lower half to two-thirds of the pleural space was criss-crossed with strands of fiber and most of the lung was unable to expand out to the chest wall. I now have a persistent hydropneumothorax there, with the loculated pockets of fluid and air now at about the 50% level, but I've never had any pain associated with it and it hasn't needed to be drained since the day of the surgery. Are you familiar with Dr. Jack West's website onctalk.com? There's an article and discussion here that might be of interest:

http://onctalk.com/2007/03/18/mpe-managment-options/

I don't have any experience with the macrobiotic diet, but you might post a question for Dr. Dan Labriola, a naturopathic physician who practices at the same Seattle cancer center as Dr. West. Here's a recent onctalk.com post by him followed by some discussion, including a comment by Dr. West which I've excerpted below the link:

http://onctalk.com/2007/08/08/cam-intro-by-dr-labriola/

People should feel free to submit questions to Dr. Labriola in the Q&A forum here. Just start a new thread and put it in the folder labeled “Naturopathic Medicines and Supplements” on the pull-down menu. He’ll check in and will try to provide the best information he can.

I hope you reach a decision that gives you peace of mind, which seems to be another important ingredient in our ongoing battle with cancer. Best wishes and Aloha,

Ned

[gail]

No advice and no opinions, but . . .

trust your gut.

And sooooo good to see you

gail

[Ry]

Hi Hebbie-

I was also thinking of Cindi having had the talc procedure and it going well. More importantly though, I don't ever remember anyone having a problem with it. I've been here reading posts a long time and there have been many about having that procedure done and I can't recall anyone ever saying they were sorry they did it or that it didn't work. I hope that helps some. Please keep us updated on how you are doing.

I hope your new diet helps you get some weight on.

[Jyoung20]

Hey Heather,

So glad to hear from you again. I'm terribly sorry it's under these circumstances.

I don't know anything about the procedure you speak of but I am sure many others will chime in and give you the scoop.

After a time of being on that diet (not as strict as I should have been), I switched to the plan you are talking about. All organics, fruits and veggies, white meat (turkey/ chicken), cheeses, back to normalcy. I don't feel as clean as I did with the macro diet but I like the other choices of food. Maybe try finding foods that have a high calory count. Bananas, etc. Maybe that will help put the wight back on. I think you are very wise in stopping that diet if you were continuing to lose weight. I would also talk to a nutritionist and maybe they could give you some insight on different food options that would suit your way of eating.

God Bless You Friend!!

Jamie

[J.C.]

Heather,

I work with patients that have cancer,

many had the talc procedure done some

many years ago and they all profited

by it.

For the diet.......none is the best

if you want to put on weight, just

skip the non cook red meat.

Where I work the patients have a choice

of eating what they want when they want,

most of them are trying to gain weight

after treatments before they go home.

http://www.lamaisonaube-lumiere.qc.ca/

this is the place where I work,

sorry it is in French, but you still

could look.

Best to you

Jackie

[fillise]

I'm wondering if the folks proposing the intervention (as well meaning as I'm sure they are) are more concerned about your following a certain way of eating or your being able to fight your cancer? I think you've recongized that your priority is to do what will most enable you to fight your disease and no one has any right to "force" you to do otherwise. You really don't need this right now, do you?

I'll be keeping you in my thoughts as you make your decision on your treatment.

Susan

[Debi]

Hebbie,

I have no advice to give you regarding the procedure. However, it sounds like you are really in a struggle regarding your diet and the reaction of your macro community and their fear that going off your old diet is going to be detrimental.

I know sometimes these communities can become over zealous with the commitment to their, lack of a better word, causes and not want to weigh anything else. Right now, it sounds like your priority is getting some weight on. YOU have battled your cancer with all the weapons available to you, there is no reason to stop now. When the macrobiotic diet seemed the road to go, you went there. Now, is the time to take another road perhaps. You NEED to keep your strength up and if that means going off the diet you have been on, then that just means that. You owe no apologies to anyone, this is your life and your fight and to do what you need to do right now should come with no guilt. This is all about YOU Hebbie, no one else and 'scary skinny' isn't where you need to be.

I understand that this post coming from someone that scarfs down a Big Mac here and there may not mean too much, but I have had healthy moments in the past. Although I know that red meat and certain foods are not good for you, I still eat them from time to time, and I am still doign okay as far as I know. So my opinion on diet and cancer is not a very strong one.

Lots of good wishes for you to be feeling less stressed soon Hebbie-

[ernrol]

I can not tell you anything about the talc procedure. I did have a pleural effusion. All pain went away when the fluid was gone. As for diet, there are lots of ideas. What I think is bad about the foods we eat, is what is put in them, antibiotics, hormones, pesticides. Chlorine, fluoride and many others. I try to eat most natural or organic meats and vegetables. I do like to eat a lot of beans which is part of the diet that you were on. What is most important is that you maintain a healthy weight if possible.

Stay positive,

Ernie

[Don M]

Hi Heather: the talc may actually slow down cancer growth.

http://news.ufl.edu/2007/06/06/talcum/

Eat what feels good.

Don M

[Larry]

Do not really have any answer's about much of what you wrote about but glad your still fighting.I do not know much about the macro diet but i would tell those people who want to do intervention to first have medical approval. Speaking of people who think they know what is best for you to me is rude inconsiderate even tho there intention's are well meaning. What has happened to make so many group's behave like policeing other people's life's is a right is troublesome to me.

But like other's have said eat what you like and let's put some weight back on.Like my Wife's Doctor told her once he did not worry what kind of food's she ate but just eat.And as for the proper eating i just live by that old saying one man's meat is another man's poison. In other word's just because it's good for you does not make it good for me.And as for Red Meat all i can say is i try and eat it in moderation but i sure like reading about all these old people around here that have ate mostly beef and bean's with Potatoes and are Healthy as Horses as the saying goes....

[wondermom]

My mom also struggles with weight. I am happy to see her eating absolutely anything. She takes Megace to help with appetite but it doesn't seem to be helping enough to put the pounds back on. I am not much help but I can see through my mom how much of a struggle this can be. I would just try to eat whatever sounds good to you and not feel guilty about it. I think it is more important to put the pounds back on than to stay on a strict diet that could hinder that. Just my opinion. Best of luck to you. Take care!

Jill

[Connie B]

One of my lc in person memeber had the telc procedure doine last year and she is doing very well today, and has had NO PROBLEMS. She is a 7 years stage IV lc survivor.

Are you sure that was a diet you were on and not a cult? (just kidding, and trying to put light on your stress)(giggle)

I have heard from doctor's over the years that it works very well.

It's very nice to see you again and I hope and pray all works out well for you.

[Andrea]

Heather I think of you all the time! I am glad to see you posted.

I have no knowledge about the talc, sorry

As for the diet, I have no expertise in that either. My two cents though is to do what is best for you and if the others in your group don't understand, WE DO!

I do know that diet plays an important role. However I also do know a few people who always ate healthy, etc, and got cancer. My mom has not changed her diet one bit (she should and does need to lose weight). Her diet of bagels, muffins, cookies, fruit, cheerios, starbucks, ice cream, some meat at times, doesn't seem to have had any impact on her cancer.

Do what is good for you and we miss you here.

[Hebbie]

Thank you all so much for your advice/thoughts! I'm still very nervous about the procedure, but the link posted to an article was a wealth of information.

To answer a few questions about my diet -- no, it wasn't a cult but some times I joked that it was! I met a group of people all following the same way of eating; many of which, were in fact, cancer patients/survivors -- some who have had tremendous success recovering solely from diet (Janet Vitt comes to mind -- a Stage IV survivor who recovered with no standard treatments, just diet -- she's been cancer free over 10 years and is a delightful and inspirational woman). In any event --I have become close with them over the past two years, sharing potluck monthly dinners, and taking trips together -- they really have become good friends. But, as someone pointed out to me, they are so focused on macro teachings, that they don't want to "lose" one of their own to "the other side". I know I need to do what I think is right for me right now -- and, I think that while macro may be right for some people; and maybe it was right for me for a short while; ultimately, it didn't provide the nutrients I needed and it is time to broaden my diet. With that in mind, and your wonderful words of advice, I have decided to call the nutritionist from my hospital and get set on an appropriate path to try to gain some weight, and hopefully boost my appetite.

*In hindsight, I also think that perhaps when I embarked on my Vitamin C Infusion Therapy last fall, that may have done me more harm than good -- my plueral effusion went CRAZY after that, and my weight dropped as well.....live and learn

Thank you again for your wonderful advice and concern!

~Heather

[ginnyde]

Heather, I was so glad to see that you had stopped in but was not happy to read your post. Was so hoping that you and Brad were just living a young happily married life.

Diet - no comment, you gotta do, what you gotta do.

My sister had the talc procedure after a couple of the 'draining' procs didn't do the job. She was gathering fluid from heart problems not lc. But the talc proc was very successful for her and she never had to have fluid drained again.

[Andrea]

You know I was thinking, if you enjoy the people, they don't need to know what you do or eat in your own home. You can still have the socialization and just keep your food intake to yourself. Sort of like a closet eater, something a lot of us chubby people know about

[Kasey]

Just another thought that has come to mind......about those who claim that the macro diet alone has been the answer to 'cure' or whatever they say ~ that Vitt person you mentioned ~ would they be in the same spot today if they had just done the regular route? Who is to say it was the macrobiotic diet, ya know? Hmmmmm........

Glad ato hear about your plan to seek out a nutritionist. Please keep us up to date. We care about too.

Kasey

[SBeth]

Heather,

It's wonderful to hear from you, I think about you and wonder how you are doing often. I have no advice to offer on the procedure and have to admit I am without knowledge on the whole macro diet issue as well, but my thoughts and prayers will be with you that you find peace, comfort and survival in your choices as you continue to battle!

Andrea,

I LOVED your post, and boy did I need a laugh this morning as I'm about to dive into my NON-non-fat latte and cream cheese danish to drown my sorrows about my busy day ahead! Now, excuse me while I shut this closet door and get on with my day!