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   lung/heart ops and we haven't even got to the chemo yet! (Cancer: Lung board)

18th September 2006
Lesley-

Yes, my wife and I have experience very much what you and your mom are going through. However my wife is 42, so it may be a little easier on her. She is currently being treated with carboplatin/gemcitabine and is tolerating very well. Since her treatments started, she has been at home and her post obstructive pnuemonia has claered up. We have an office visit tommorow to consider putting a stint in her left lung which colapsed due to an obstructive tumor.

When it comes to people, we sometimes have to act as a filter to protect those we love. It isn't easy, especially if you attempt to be gracious about it. But is sounds like you have a great attitude. Your mom (mum) is fortunate to have someone like you by her side.

By the way, my wife's blood lab was really good after her first treatment. It might be due to some natural immune booster/inhancers she is using. A couple of suppliments you might want to research: Max 3 (cat's claw; maitake mushroom; IP-6 & inositol), echinacea/goldseal and bromelain. Not to mention a variety of vitamin/mineral suppliments.

At the present, our goal is to get my wife into better shape and at the completion of her chemo see if we can try her on Tarceva (a once a day pill treatment). You might want to ask about it (research it).

hang in there,

conan
19th September 2006
Lesley, I am sorry to hear about the rough time your mom has had. It sounds like she has had more then her share of problems but hopefully they are all in the past. My Mom had 3 plerual effusions in the beginning but then had a pleurodesis done and had no more problems like that. My mom's first line chemo was carboplatin and Taxol. The metals in the carboplatin tend to make food taste bad so watch out she may not feel like eating much. My mom is currently on Taxotere and Gemzar, so she has had both drugs just not together. Watch out for any signs of infection like fever even low grade fever as both the chemos can drop her blood count and make it way too easy for any bacteria or virus to cause a problem. As we learned don't count on her oncologist always catching a problem as my mom's was willing to write off what turned out to be both a bladder infection and an obstructive pneumonia to just cancer progression and had I not insisted on tests she would have gotten septic and died.( this was during her 1st 6 months so now I know why the death rate is so high during that period!)

I read somewhere that there are 3 reasons people with cancer die. 1) malnutrition 2) infection 3) organ failure. Hopefully you can control #1 and #2 and thus prevent # 3.


Conan, Does your wife's doctor know she takes the suppliments? It seems most oncologist are so against it for fear it will interfere with the chemo. I totally disagree and feel they should be on them as the immune system needs the help as if it is not strong how can they beat the cancer? My Mom's oncologist is totally against it and due to my mom's age she pretty much does what he says thou I did get her to take Immunopower for awhile but then she quit taking because of the doctor. I think it was helping but she is so set in her belief that doctors know best.

Lesley do your mom's friends have computers? I ask because when my friend had Hodgkins Lymphoma and was getting chemo and radiation she would once a week type up a E-mail about how her week went and send it to everyone. It saved her the hassle of everyone calling her and at the same time those that care about her were kept in the loop and were able to handle her illness better. People sent her cards, flowers , left meals for her family on her front porch after telling her they would via E-mail so she had a ton of support yet only had to deal with visitors when she felt like it and no one had hurt feelings. It really worked well . My own mom has enjoyed visits and phone calls. She has had days where she was feeling real down and the phone call of a good old friend has perked her right up but we are all so different in the way we feel about this issue when we are sick.

Your mom and Conan's wife have been added to my prayers.Conan I hope that your wife continues to do well and if she is put on Tarceva I hope she is like my mom and has a good responce to it. My best to you both.;) JanMarie
20th September 2006
janmarie-

About six weeks ago my wife was admittted with a high grade fever and she had broke out with a rash all over her upper body. I thought it might be something I was giving her, so I brought everything in. They concluded the rash was due to the fever and had no quams with the suppliments.

The immune system is pretty amazing, but it cannot work as effectively without proper nutrition/suppliments. Most oncologists are generally concerned with is treating cancer. They are not pastors, counselors or nutritionalists. I believe fighting cancer is holistic, that is you have to fight on more than one front.

All I know is that my wife is improving on every front right now, so our oncologists would really have to convince me stop. In fact, the main book I am using is a collection proven treatments used by 37 top physicians that were sucessful in reversing various types of cancer. Suppliments like bromelian (enzymes extyracted from pineapple) have been clinically tested with chemo patients whosaw 30% more tumor reduction than those not using bromelian. The suppliments to avoid when taking chemo are the "G" suppliments line ginsing, ginkoba, ect..

About Tarceva, would you mind sharing your mom's experience with it? Did you have trouble getting her insurance to cover it? How did it make her feel? ect..

Thanks for remembering us in prayer, my wife's name is Patsy. I will pray for you and your mom as well. God bless.

conan
21st September 2006
Conan,

I agree about the immune system as I believe that our bodies were made with the ability to heal themselves if provided the right nutrients. I read the book Beating cancer with Nutrition by Patrick Quillin and don't understand why most doctors seem to ignore the nutrition part of treatment.To me it seems to be just as important as the chemo. I also lean toward the holistic methods as I know with my experience with animals that holistic methods have often worked better then conventional medicine.

I have to tell you since your wife's name is Patsy my mom's is Pat!

My mom belongs to a Kaiser a big HMO so she had no problem with them covering the Tarceva. After finishing her 1st line chemo they gave her a break she was very weak and instead of getting better she got worse and could not walk far so we were using a wheelchair, She also was very short of breath. We went to see her oncologist and she had a low grade fever . He wanted to just write everything off to cancer progression butI made him order a urine culture and wanted an Xray especially when he said he thought she had another pleural effusion but despite her gasping with any movement he refused saying it wasn't that bad yet and it was probably due to cancer progression. We went around him which is not easy in the HMO world and got the pulmonologist to order an Xray. It turned out her whole right lung was whited out as she had an obstructive pneumonia as the cancer was progressing. She also had a bladder infection. With those two infections she was probably a day or two away from sepsis and that would probably have killed her. They put her on Irressa and antibiotics.

She got home and took her antibiotics and her irressa and by the next morning she was feeling better and each day we saw major improvement and she was soon walking without feeling short of breath and saying she was feeling better then she had in years. After that first month she was switched from Iressa to Tarceva as Tarceva had just been approved 2 months prior and Iressa was being taken off the market. Anyway she was soon to the point where you would not know she had ever been sick. CT showed major shrinkage in the lung tumor and in the liver mets as well.
About 7 months ( Aug 2005) after starting the Tarceva the CT showed the liver mets were progressing some but her lungs had no eveidence of cancer except a scar where the tumor had been. The lungs have remained that way so she has not suffered all the lung problems most do and has had no shortness of breath so was able to live a pretty normal life until now.

She did get a rash with the Tarceva but hers did not itch and looked like teenage acne. Her skin was dry and flaked off and her finger tips cracked and she did have mild constipation but she has never been one to drink enough fluids. She felt great while on the Tarceva and even had more energy then she had had in years. Those few side effects she had were well worth what the Tarceva did for her.We will always be thankful for the Iressa and Tarceva as her reults were quick and dramatic.There was no doubt in our minds that it was working before we got the first CT.

I think Tarceva has proved itself over and over in people that respond to it so I can't see insurance companies refusing to pay for it now especailly in someone as young as Patsy . When it works it often does more then chemo ever will. I have met people that were on Irresssa and are now 4-5 years cancer free and others on Tarceva that have been cancer free since being on it so it is all an individual responce which is where having a built up immune system should be a huge benefit. I hope I answered your questions. Feel free to ask more if I have not.

Godbless you and Patsy. I want more then anything to see someone on this board win this battle against lung cancer.;) JanMarie
26th September 2006
Les, my hubby Bud had Gemzar/Carboplatin for his first round of chemo and actually put him into a temporary remission. Following that was the Tarceva, followed by Nevalbine/Texotere, followed by Alimta, followed once again by Gemzar and Carboplatin,with Avastin added to the formula. The latetest seemed to be the most effective and went back into remission. Then, we found out the LC did mets to the bone, his spinal column and left hip. That devasted him and..well, us. His chemo oncologist will not treat him until the radio oncologist is done with him, which worries me. His chest CT done 2 or 3 weeks ago still showed him stable, but with all of the radiation and not to mention the latest tremedous stress, I wonder if this has brought about activity. Gemzar and carbo were the most tolerable for him. His did well both times and actually, beside the usual fatigue and tendency to burn very easily while exposed to the sun, he made it through with ...as you would say...flying colors. I hope everything goes OK at your end and you are always welcome here. We do try out best to help in any way we can. God love you. You have been added to my prayer list.

Jan
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