CSN Login
Members Online: 3

You are here

I'm 27. Stage IV Lung Cancer. New Diagnosis

spicysashimi
Posts: 9
Joined: Sep 2006

About a month ago, I went to the hospital for chest pain. On the x-ray, the doc noticed a nodule. CT scan confirmed and showed some baby nodules. After a fine needle aspiriation at one hospital, they diagnosed it as neuroendocrine carcinoma (a rare aggressive cancer). I went to MSK for a second opinion. They did a core biopsy. Pathologists are "100%" certain its NSCLC. Pet scan shows bone metasteses to back and hip. I was generally asymptomatic before I went to the ER (moving heavy stuff, exercising, etc.).

I got carbo and etoposide when they thought it was neuroendocrine. Now it will likely be carbo, taxol and avastin. Interestingly, and maybe someone else has experienced the same, I had almost no bone pain prior to chemo. My back was a littly annoying, but I chalked it up to a bad nights sleep. Two days after my chemo stopped, my back pain went from 1 to 9. It was throbbing and borderline debilitating. Now two weeks post-chemo, the back pain has subsided mostly, but my chest (site of big tumor) and hip (hip, especially) are up to 8/9. I had NO pain in my hip prior to chemo. Now I limp, even on oxycontin.

I'd like to think that this is the cancer cells reacting to the chemo, preferably by cell death. My doc, who's not my favorite said its just cancer pain. I asked how it could go from a 1 to a 9 in a week which happened to be the same week i got the chemo. Then she started saying that the pain has been there all along and now I am just noticing it. Bullshit. This pain is like YEEEAAAAOOOWWWW. It was not there.

Anyway, just like everybody else I guess: scared, confused and hopeful. The doctors say that lung cancer in a non-smoking 27 year old is unheard of. But then they make comments about survival. My response is this: if its so unheard of that a non-smoking 27 year old can get lung cancer, then why can't it be possible that I survive this cancer? Why can't the shitty odds that worked against me, now work for me?

I am interested in supplements and diet, but my doc is dismissive. I've been reading some good books. I'd love to talk to some of you if its ok. I am going to repost this in the young cancer survivor board but I identify as a lung cancer patient first. Keep fighting and keep believing.

kaitek
Posts: 156
Joined: Aug 2006

Hi spicysashimi,

I'm short of time right now but I just want to let you know that I am interested in your case. It is always shocking to hear young people get lung cancer.

That's it for now. I'll talk to you more tomorrow. Just want to let you know a friendly voice wants to help get you through your cancer.

Stay resilient!

spicysashimi
Posts: 9
Joined: Sep 2006

Thanks Kaitek,

My pain subsided today. i take that as a good sign. One day at a time.

kaitek
Posts: 156
Joined: Aug 2006

Hello again spicysashimi,

It's wonderful to hear your pain has subsided. Yes, as I've told people take every improvement in your physical condition as small victories in your road to full recovery. Keep that attitude each day will be better. That has worked for my mom who has come a long way from nearly bed-ridden to exercising at least an hour a day. Mind you, my mom's cancer had spread from her right lobe (with a tumor mass of 6 cm) to the lung linings, lung lymph nodes and pelvis. She is 76 years old.

In her favor is her physical fitness before lung cancer resided in her body and genetics that are receptive to chemo (but paradoxically might have made her more susceptible to lung cancer even when she never smoked).

I think in your favor is your youth to fight the cancer. Our immune system and ability to recover is much better as we are younger. (Our immune system wanes as we age, while recovery time increases. That's the reason chronic diseases typically take over when we're older, with cases such as yourself as aberrations.)

Your pain progression doesn't make a lot of sense simply because of cancer. If it were due to the cancer alone, it would mean the cancer multiplied in such magnitudes in just 2 weeks that it has taken over parts of your body. 2 weeks seem too short of a time for that to happen. I mean, even my mom whose cancer was aggressive (in 3 months alone it spread all the way to her pelvis) didn't suffer debilitating and excrutiating pain. In her pelvis, she felt more a weakness. But she never needed pain management for the cancer. The worst pain she felt was from the tube inserted down her throat for the anasthesia during surgery.

Oncologists will tend to be dismissive of supplements as they have been trained to be clinical. There is no definitive study to endorse any supplement or food component because it is impossible to make indisputable conclusions of studies based on human subjects when the involved factors are so convoluted and enmeshed. Unlike rats, diets cannot be standarized. Neither can treatments. Reading this site alone, you find that hardly two people undergo the same treatment even when Carbo and Taxol are considered the go-to treatment option. People's cancer AND genetics respond differently to different drugs and their combinations.

Because of that latter fact, it is critical to be cared by a competent and skilled oncologist. I can't make that assessment about your oncologist. But considering you're not satisfied with your oncologist, you should look into finding another. Perhaps one who is associated with a leading edge cancer research facility. Then, you can be assured that oncologist is on top of the latest treatments and effective drugs. Treatments are becoming more genetically targeted, so having an oncologist with access to that research would improve your chances of recovery.

The latest cancer advancement is with the genetically modified lymphocytes removed from skin cancer patients (whose prognoses were pessimistic without that new treatment). Scientists boosted the T-cells to attack the cancer cells. Then they injected those modified lymphocytes back into the patients to let those newly powered T-cells do their work.

I don't know where you are in the schedule of your cancer therapy. If you're due for a CT scan, you can tell then how well your treatments are working. The oncologists can adjust the treatments based on that. There are lots of options, so never give up!

Now, on diet supplements, they certainly don't hurt (be sure you consult with your oncologist that they don't interfere with chemo). My oncologist (who is very smart and competent and is on the faculty of a leading cancer research educational institute in the nation) didn't object to multivitamins that didn't exceed 100% of the RDA. He did not recommend megadoses. He is very clinical so I don't think he would deviate from his professional training in advising his patients to depend on supplements. On the other hand, he is willing to work with naturopaths for his patients.

From what I read, the potent cancer fighters are garlic, turmeric, broccoli (and other cruciferous vegetables) and green tea. The brightly colored vegetables and fruits have lots of antioxidants that prevent oxidation cellular damage. You must keep in mind that chemotherapy's works on oxidation to attack cancer cells. So you have to balance this antioxidant protection to the oxidation processes needed by chemotherapy.

I will tell you that I have settled on my mom's oncologist's advice to skip the supplements on the day of and day after chemo. He didn't mind my mother taking the supplements even on those days, but pressed for a suggestion that was what he came up with.

If you're off chemotherapy, I would suggest loading up on more of the reported anti-cancer foods and dietary supplements. Restrict your saturated fats intake while eliminating trans fat. Those fats are unhealthy regardless of cancer or not. Tailor your diet so it favors more veggies and fruits (at least 5 servings a day) over meats.

Good luck in your battle with cancer and may you stand triumphant!! Please keep us updated. I can't get over your having cancer as young as you are and with no smoking history. It's unfair the lot you got. In spite of that, focus on getting well and not dwelling on the why and how. Your energies must be directed to recovery.

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

Hi. As a survivor of nsclc, 3a, I would tell you that you have the right attitude toward "the odds". Ignore them. I was dx'd as inoperable/incurable five and a half years ago. Also, - in my opinion, you should seek a second opinion. "The pain was there, - you just didn't notice it" -?????? I don't think so! Chemo will, sometimes, have strange effects, but I think that you should find another doctor and start from scratch. My doctors never talked about survival, - they talked about what we were going to do about the cancer. Stay positive, and keep us posted. Best wishes and prayers to you.

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

I understand your frustration I had stage IV lung cancer I took a lot of supplements. I checked each one with my oncologist. You may want to look into a second opinion. You need to have an oncologist that you have a lot of confidence in. I have been cancer free since November 2005. I will be 70 in March. If I can have good results then so can you. . I found out today from my oncologist that the treatment he gave me is what some doctors would only give a young patient. Let me know if you have any questions. My story is posted here. If you have any questions about any of the things I did you can e-mail me. You can read my story on my web page, just type ernrol in the search box above, and then click on ernrol to the right; my diet and supplements are to boost my immune system. Stay Positive
Ernie

Diane411
Posts: 13
Joined: Aug 2006

Hi spicysadhimi,

IT IS POSSIBLE THAT YOU CAN BEAT THIS!!!! Don't pay any attention to the "odds". They tried to give us stats when my dad was first dx. I REFUSE to listen and accept nothing else than my dad surviving this.

I am one of my dad caregivers. He was dx almost 3 months ago with nsclc, stage 3b. His tumor was large (5 cm) and sitting on top of his right lung. It took them 3 months to dx him, meanwhile he was in horrific pain. He has just finished his 30 radiation treatments and 6 chemo (taxol-carbo) treatments. The chemo went very well, but the radiation kicked his butt. He is having his post-treatment CT today to see how effective the rad/chemo was.

I was not impressed with his radiation oncologist. It was very unfortunate, we had no time to get a second opinion. The tumor was butted up against this spinal cord, so radiation was started the day after is initial consult. I really like his chemo onocologist. However, I want to make sure he is getting the best possible care, so next week I'm taking him to a cancer center for a second opinion. If you are the least bit uneasy with your oncologist, definitely get another one.

Kaitek has good advice about supplements and cancer fighting foods. My dad is unable to swallow at the present time b/c of the rad to his neck. His esophagus is inflammed. This should subside in about 2 weeks. I plan to start him on a diet of green leafy veggies. I read that your plate should be 2/3 plant-food filled and only 1/3 meat, fish or poultry.

The fact that your pain has increased since treatment makes no sense. I'm not sure, but I would hope that while in treatment, the cancer cells can't divide. My dad is on a pain patch now and taking Percocit for breakthrough pain. I've watched him suffer through the pain when nothing would help. He also took oxycontin. It would only alleviate the pain for about an hour. Finally, he got a pain patch. I don't remember what the name of it is, but it's 100 micrograms. It has really helped manage his pain.

One thing I have learned through this site is that staying positive it half the battle. Accept nothing else but survival. I'll be thinking of you and good luck with your treatments. Keep us informed.

spicysashimi
Posts: 9
Joined: Sep 2006

Thanks everyone for your input and support. The people on this website are incredible and I am inspired by many of you.

kaitek
Posts: 156
Joined: Aug 2006

Hi again spicysashimi (and to you, too, Diane411),

I just read news on the latest green tea study conducted in Japan with a good study size (over 40,000) and subjects came from one region of Japan (which theorectically should standarize somewhat the diets to regional cuisine). The findings did not support any link between green tea protecting against cancer. I should say they couldn't find an overwhelming link. The only benefits they could conclude were for the heart. But since the Japanese diet is already healthy (low red meats, heavy on seafood and veggies), some scientists dismiss even green tea's role in heart protection.

I've mentioned before the FDA has not allowed green tea manufacturers making any health benefit claims.

With that, I won't be that dependent on green tea as a cancer preventative when my mom is in remission. (She hasn't been drinking it while on therapy.) I still believe cruciferous veggies are a key. Turmeric has merit (if only I knew how to incorporate as part of the daily diet). And selenium may be beneficial.

At the very least, taking a multivitamin ensures that you are getting your nutrients (not necessarily to help fight cancer or prevent it). I mentioned this before that 40% (I believe that was the number) of cancer patients die from malnutrition itself. That's a significant percentage in which you have a hand in preventing by eating well.

I've also noted that 50% of lung cancer patients still smoke when nicotine negates the curative power of chemo/radiation. I tend to believe that the percentage may be even higher as people may be too ashamed to admit they couldn't quit. I know of smokers who underreport the number of cigarettes they smoke when I know better they smoke much more. So with that, I think the smoking cancer patients drive down the survival statistics even greater and cloud the stats for those patients who don't smoke.

So, you can take those statistics to heart to give yourself better chances than the numbers on the surface. When you fully recover from cancer, you will be an inspiration for others not only in general but for the rare cases such as yourself.

Diane411, good luck on your dad's CT scan. If you're up to it, I'd love to hear the good news either on the board or by private message. I'll be hoping good progress has been made.

When you start feeding your dad leafy green vegetables, you may want to try the vegetables in the bok choy family. It's a very nutritious vegetable with high calcium, potassium and other vitamins, including the cancer-fighting and preventative compounds. It's rather simple to cook, too. Just stir fry it in oil with 2 minced garlic clove for a few minutes until tender then add your seasoning to taste (e.g., soy sauce and sesame oil). Or you could just sauteed strictly with a lot of garlic in oil for a garlicky flavor. Another cooking method is to blanch it and then add your sauce of choice (Chinese typically use oyster sauce; I wouldn't put ketchup on it though!). Baby bok choy is a little bit more expensive, but lot of Asians like the convenience of the smaller bok choys and the even proportion of leaves to stems. The best thing about bok choy is that it's not as fibrous so it doesn't cause indigestion as broccoli does.

DianeMB
Posts: 4
Joined: Mar 2007

Hello Spicy and Diane,
My name is DianeMB and my Dad was dx with Neuroendocrine carcinoma around the end of Jan. 2007. He was admitted to the hospital with onset Diabetes, but after running tests they found the cancer the rt lower lobe of his rt lung and after more tests they found it in his brain also. They immediately started him on chemo, because it is small cell, and most aggressive. But not before telling him he had 6 mo to a year to live. He will start radiation on his lung on Apr. 4th but they have yet to discuss treatment for his brain. He is really strong and handling the chemo well, at least after the first week. But he's afraid of the chemo and radition together. So am I. I've been praying and trying to spend as much time with him as possible, but it hurts to think about him suffering. I've already lost my mom to colorectal cancer in 92, she SUFFERED, but without a word, only a groan from time to time. She was 41. Her twin died a year and a half later of breast cancer, she was 42. Seeing the suffering and the deaths has taken a toll on me mentally. I don't what scares me most seeing them die or having to live without them. I hate to ramble but I need solace. The Lord keeps me but my human emotions are just as real as He is. I'm glad to hear of survivors, it gives others hope. Even me. But it's just hard right now.
Thanks for listening.
DianeMB

raosud
Posts: 3
Joined: Aug 2007

Hello,
My name is rao, my wife (30 years old) is diagnosed with well diffrentiated Neuroendocrine carcinoma around may 2007 as stage 4, she has a mediastainal mass ( 10 cms) and had a tumour on skull bone, which was removed in june. There are small lesions on back bone ( T4 and L1).
Doctors immediately rushed us to go through chemo therapy ( carbo + etoposide) and later found that after one round that bony tumour on head was not responding - so got surgery to remove it.
recently went through 14 days of radiation on her chest, back and head and now has lot of pain in her right hip, difficulty swallowing and has not being eating at all.
Doctors are planning to start her chemo next week.
Do anyone has any suggestions on what to expect on how many numbers of chemo cycle she has left - and any thoughts on survival rate for these kind..
Any help on doctors/treatement will be most valuable..
best regards to all
rao

keithwayne204
Posts: 2
Joined: Sep 2006

hi just dont ever give up u can beat this i know iam its been now 2 and a half years when i heard that word but now i laugh at cancer and keep my faith strong its in both of my lungs thy do have a new study where iam from called phase 1 its susposed to destroy and suffer the new cells

AuthorUnknown
Posts: 1560
Joined: May 2006

I want to share my story with you and hope you will share with others. My close friend was given 3 months to live his Dr, stated there was nothing they could do no more chemo or radition could be given the Cancer was to far gone. He started eliminated Sugar from his diet and was taking a cellular ready liquid supplement made by the Eniva Corpiration called VIBE. He continued this for 2 months taking 3 ounces a day and went back to the Dr. and after a series of test the Cancer was gone. The report was amazing. His told me his Dr. did not know what to say. He stated he did not think he would see him again. I myself have started taking the supplement and have never felt better. I am so passionate about this that I wanted to share this with you and any others that may be interested. My husband has started taking the supplement and his Arthritis Pain is gone.. I thak god every day for giving this supplement to my Friend as well as me and my husband. You can buy the supplement a www.myrevive.com/naturalsupplement My prayers are with you..God Bless

AuthorUnknown
Posts: 1560
Joined: May 2006

I wanted to continue due to I ran out of space. I wanted to share my finding on supplements. It is amazing that if we give our bodies the right amount of Nutrients and Minerals what the body can do. The supplement is not a cure. Here is some info on it:Vibe does not treat, diagnose or Cure any Disease, it just feeds the Body
What it needs to cure itself!

Cellular Medicine in Cancer

Cellular Medicine provides a new perspective in the developmental
steps of cancer and its metastasis and new safe, effective
therapeutic options.

Choices and Outcomes in Cancer Treatment:
For decades, standard treatment for cancer has consisted of
surgery, radiation and chemotherapy. Radiation and chemotherapy,
the most frequently used therapies, not only are ineffective in
providing a cure, but also indiscriminately attack all cells -
healthy and cancerous, causing cellular damage and destruction of
the body's connective tissue, the defense against cancer
metastasis. Both radiation and chemotherapy trigger the development
of new cancers and damage the immune system and body organs. In
addition, these interventions activate enzymes that facilitate the
release of cancer cells from a localized area to spread to other
organs.

The Matthias Rath Research has achieved a breakthrough in
cancer research by defining the cellular mechanisms involved in
cancer proliferation and metastasis and developed a natural means
of controlling these mechanisms. Efficient control of the spread of
a disease by collagen-dissolving enzyme blocks has been successful
with several diseases. This is especially important in diseases for
which orthodox medicine has no preventive or healing therapies yet.
A combination of natural nutrients formulated to support the body
in curbing metastasis and reversing tumor growth, has been shown to
be effective against a variety of human cancer cell lines, without
adverse effects on normal cells.

EHS1960
Posts: 1
Joined: Sep 2006

Hi Spicysashimi,
i'm one of the very lucky ones!! I was diagnosed 10/04 w/a 1.2cm. lesion adenocarcinoma stage 1a. Luckily, surgical removal of the rt middle lobe got it all, but ACS recommended 4 chemo txs as a precaution. I had Carboplatin and Taxol. Between the Taxol and an injection of Neulasta given the day after the first tx, I had 8 days of excruciating bone pain, mainly legs and lower back. The pain was with me for several months. Were you given Neulasta or similar to keep the white cells up? If so this might be the cause of your pain. I advise you to seek another opinion. New advances are made daily. My prayers are with you.

walley
Posts: 2
Joined: Nov 2006

Please try to find a new doc that is going to listen to you and try to go to bat for you

Subscribe to Comments for "I'm 27.  Stage IV Lung Cancer.  New Diagnosis"