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He is only 35...I need hope!

jules24
Posts: 7
Joined: Oct 2006

Hello everyone, I am new here. My brother Tim was diagnosed with stage IV nsclc about 3 weeks ago. He is only 35 years old and has never smoked a day in his life. He went to the ER with some chest pain and they thought it was a heart attack, but after the testing, they determined it was cancer. The news has been overwhelming, I am desperate to find some hope, he is currently in a clinical trial receiving Avastin as well as Tarceva, I have read a lot of your posts and Tarceva sounds encouraging. For me, I mostly feel like I can not breathe, we are four years apart and have always been very close, he has been my hero since the day I was born. He has two daughters, 6 and 2 and all of this seems incomprehensible. I have several questions and I am hoping some of you might have the answers. I read several posts about stage IV nsclc and I want to believe that there is hope, he was told that it is inoperable/incurable, so I am wondering if the drugs are able to shrink the tumor, can stage IV become operable? Can stage IV go into remission?
I have also read many of your posts regarding diet and nutrition as well as supplements, if anyone has good information on this and suggestions, I would love to hear them.
With being on the Tarceva, he is starting to experience the rash on his face, has anyone found any effective ways of managing this?
I feel as though I have a million questions for all of you, I was very happy to have found this website, I think most of all what I need is hope, I have never been so afraid in my entire life or felt so helpless, I would be so grateful for your stories of strength and hope. Thank you so much.

Plymouthean's picture
Plymouthean
Posts: 264
Joined: Jan 2004

Hi. I'm a five year survivor of NSCLC, stage 3a. I was diagnosed as inoperable/incurable. That meant that, as presented, on the day of diagnosis, I was inoperable/incurable. My oncologist sent me to be evaluated by a thoracic surgeon, who determined what needed to be done to make me operable and possibly curable. With aggressive chemo and radiation, the tumor was reduced by 75%, and surgically removed. I am now five years out from surgery, and I am cancer free. The choice of treatment(s) is up to your brother's doctor. I would not venture a recommendation regarding that, but have a positive attitude, and believe in his doctors. My doctors focused not on odds or statistics, but on what had to be done to beat the cancer.
My best wishes and prayers to you, your brother and his family.

jules24
Posts: 7
Joined: Oct 2006

Plymouthean,
Thank you for the reply, I am not very familiar with stage 3a, does that mean the cancer has spread? I so appreciate your prayers.
Julie

ernrol's picture
ernrol
Posts: 91
Joined: Apr 2006

Jules,

I received your mail message and answered before I read your post. The post answers a lot of the questions. The Avastin and Tarceva sound like a good trial to be in. Do you know for sure if he is getting both drugs or is there a chance that there may be a placebo?

Plymouthean and I are two examples of people being told that there is no cure. I was told this by two doctors; fortunately they were not my oncologist. I could not have surgery or radiation. After three months of chemo they thought they could use radiation. When they did the checking to do radiation and then possibly surgery, they found nothing but scar tissue. You just have to trust in your doctors and pray that they make the right decisions. What is right for me may not be what is right for someone else. At first I was concerned that I did not have surgery or chemo, but if I stay cancer free, I think it is nice to have both of my lungs whole and I do not miss the radiation.

I will be sending you more by e-mail when you send for it.

Stay positive,

Ernie

kaitek
Posts: 156
Joined: Aug 2006

Hi Jules24,

It is natural to feel afraid and distressed when diagnosed with lung cancer, especially at the late stage of 4. If my mom had been diagnosed with an earlier stage, I would have been okay with it instead of practically losing it. Her thoracic surgeon gave good encouragement she would be a good candidate for a treatment (her oncologist and we figured it was Tarceva), but it was before we knew her cancer was so advanced. So it was devastating to hear the cancer had spread so much - to her lymph nodes, lung linings and pelvis. It's overwhelming!

Then, I read of the survival stories (with a few in the late stage of 4) and it gave me enough hope and encouragement to help my mom recover. Like all stage 4 cancer patients, she was told the cancer was "incurable," for which I just took that there would always be a chance of recurrence. But I'm dealing with this possibility of recurrence with a good diet regiment that definitely includes cruciferous vegetables (my supplementary weapon against cancer after chemo and it will be primary when my mom is off chemo), raw garlic clove and walnuts (it has anti-cancer properties in its ellegiac acid, melatonin and vitamin E). Right now, I took my mom off of multivitamins and selenium as those are anti-oxidants, which I decided I didn't want them to interfere with the oxidation mechanism of chemo. I figured with good nutrition, my mom would get those nutrients in her foods. So, it's important to get at least 5 servings of fruits and vegetables, the appropriate amount of protein and stay hydrated. When she's off chemo, I'll put her back on the multivitamins and selenium (will reduce from 200 mcg to 100 mcg), and maybe I'll add turmeric or cumin to her diet (still haven't decided on a good recipe though). I am convinced of cruciferous vegetables and that's one item I am definitely sticking to.

I'm curious as to why your brother is already in a clinical trial before trying chemo. Avastin and Tarceva have been proven to be effective with certain people. In a clinical trial, isn't there a possibility your brother is receiving a placebo? I hope that's not the case.

You may want to have your brother tested for either chemosensitivity or the EGRF mutation. If a biopsy was done with a large enough sample, the cancer cells can be tested for chemosensitivity. Then, the therapy can be tailored specific to his cancer. The EGRF mutation can be tested with any sample. Now, as my mother's thoracic surgeon stressed, one doesn't need the EGFR mutation to fully recover. But it might relieve your and your brother's mind if he does have that mutation and then they can go directly to Tarceva.

Like Ernrol, I was concerned that my mother wasn't receiving radiation or surgery - as that seemed to be the protocol most of the survivors received. But my mom is doing well with just Taxol and Carbo. Keep in mind, my mom's cancer was quite advanced. And she is a lot older than 35. Hopefully with your brother's youth and vigor in his favor, he has a lot of fight (immune system to help chemo or cancer drugs) in him. If I were to advise one dietary aid, I would go with cruciferous vegetables which he should eat as often as possible, especially on the days around his chemo day. The compounds in cruciferous vegetables put the stop in chemo resistance of the cancer cells to make them more vulnerable, along with the cancer-killing agents in those vegetables.

Good luck and don't be discouraged!! We've been there and I can tell you it will be okay! It's extra helpful your brother has never smoked. You have to keep in mind those dire statistics involve mostly smokers who still smoke (at least 50%).

ernrol's picture
ernrol
Posts: 91
Joined: Apr 2006

Kaitek,
I have not forgotten about Turmeric and my soup recipe. I have to run one more batch of the bean soup to make sure and then I will post it or send it to you. In the mean time I have been having a lot of fun with Turmeric. Her is a list of things I have added it too with great success. I add one half teaspoon to the following:

One serving of my bean soup
A single serving of Salmon Salad
A single serving of cocktail sauce used with shrimp

I think you can add it to a lot of condiments like Catsup, Low Fat Mayonnaise, and Mustard etc.

If you want to try something with raw Garlic, put a few crushed gloves in some plain hummus. The hummus is also good for you, but it does have a few calories. I had to stop for a moment, because I thought why not Turmeric in with the Garlic and Hummus. I just whipped up:
One half cup plain Hummus
2 large cloves garlic crushed
1 teaspoon Turmeric.

It was very good on whole wheat, Wheat Thins. If you want to try something else, boil some eggs cut in half, remove and discard yolks, fill with hummus mixture above and you have great deviled eggs. The Turmeric gives a nice color to the filling.

I will keep working on more ways and the soups.

I just did not want you to think that I was as bad as the FDA about my recipes.

Stay positive,

Ernie

kaitek
Posts: 156
Joined: Aug 2006

Hey Ernie,

Thanks very much for your recipe ideas. I think the one that will work or one I will try is the deviled eggs with turmeric.

So, does turmeric have a strong bitter taste? Or is it fairly bland as say paprika? Do you take the 1/2 to 1 teaspoon a day recommendation?

I've been fairly disciplined with the cruciferous vegetables. With cruciferous veggies, there are so many variations from radishes to the Chinese family, there's no problem in getting bored or falling into a rut.

If Cabbott is around, I read the latest news about cabbage's benefits against breast cancer. It was very promising. Hope you got a chance to read it.

CHG
Posts: 34
Joined: Jan 2005

http://www.acscsn.org/webpages/view?object_id=csn:rel:wallace1798640697051046211475

The above link is here on the Cancer Support Network for your information from one of our members. I suggest you research this doctor on the internet. He is truly fantastic. He makes no promises. I found him to be very effective for me.
Carol

jules24
Posts: 7
Joined: Oct 2006

carol,
thank you for the information, I am going to look into it.
Julie

jules24
Posts: 7
Joined: Oct 2006

Kaitek,
Thank you so much for taking the time to respond, I am trying so hard not to look at the stats, everyone has been so supportive and encouraging, I am going to surround myself with that.
Thanks again.
Julie

sunprairietina
Posts: 3
Joined: Oct 2006

Hello, I am 36, a nonsmoking female and I am a one-year lung cancer (BAC) survivor. Carbo/Gemzar chemo failed, next was Tarceva. It's working beautifully. I just live life day to day and enjoy my health, my husband and my 3 boys while the drug is working. The side effects can be managed and they are much more tolerable than traditional iv chemo. I am hoping that there is a drug available soon (HKI-272) that will make the Tarceva work indefinitely, even if there is the secondary mutation. Never give up hope, there is so much research and many new drugs/therapies on the horizon.

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