My thoughts: surviving cancer

[Surveyor]

Posted: Sat Aug 13, 2005 7:41 am on lchelp.com Post subject: My thoughts: surviving cancer under LC SURVIVORS category.

I’ve been fighting NSCLC (first diagnosed as Stage IV) for nearly 2 years. I think I’ve learned many things and would like to post some of the things I’ve encountered that may help others. I honestly think that I would not be here if I not stumbled on this website early in my cancer fight. I spent time going back through all of the archives. Many of the things mentioned below, I either read here or was led by this site to investigate something further on my own. Thank you to all of the website supporters, volunteers and other posters who make this valuable forum possible!

I believe my cancer fight has been blessed. Too many doors have been opened just when I needed them! I’ve felt pretty good and enjoyed life for these last two years. I don’t have the energy to work and play as hard as I would like, but I’m up and around. My wife of 40 years has been my rock to hold onto – this whole experience has been harder on her than me. Our two grown sons have been very loving and around more than usual. I’ve been in a lot of people’s prayers and I know this has helped.

Cancer blindsides most of us. I am a land surveyor who enjoyed a small practice doing my own field & office work. We had just moved to a new area (to make more $$) and I suddenly had swollen ankles. The first doctor was sure it was gout. He did order a blood test and it came back that I was anemic, which explained the old age creeping up so fast.) I had been a vigorous guy in his late 50’s.) Next visit, I saw another doctor at the same clinic and he suggested iron supplements and keep my feet elevated. About this time I had a call from a recommended internist’s office who initially was not accepting new patients, but I asked them to call me if they ever had an opening. This doctor ordered a chest X-ray – bingo – my cancer battle began. Fortunately, I had a major medical insurance policy and a little savings. By the way, Blue Shield of California has been fantastic throughout my battle – they’ve never denied a procedure and quick approval was always forthcoming.

The next stop was a medical oncologist at a small cancer clinic. He thought I should take palliative chemo-therapy and be prepared for hospice in the near future. I went home and started studying. Read something about clinical studies and asked the oncologist on my next visit if he could recommend and get me into a clinical study. A few weeks later I was taking chemo at major university medical center in California.

The protocol for my illness was palliative chemotherapy only. After the clinical trail, I was supposed to go home and they would observe. To me it seemed like they were going to observe the progression of the cancer and see if the chemo-therapy added any time to my lifespan. The protocol business looked like it was setup to protect the doctors from liability. I have seen too many friends and relatives get different forms of cancer, receive chemo-therapy, slide downhill and die within six months or so.

At this time I figured I better move my wife back to our hometown to be close to friends & family. Friends I had not seen in years came around to help us move. With the move I was driving to 250 miles (one way) 5 times every 3 weeks for chemo and to see the medical oncologist.

My ankles were still swollen and the oncologists just said that the adenocarcinoma was causing it. One day while I was receiving my infusion, a substitute nurse came around and asked me how I was doing. I mentioned I was fine except for the swollen ankles and she took a look at them. That day I had an ultra-sound and was put on coumadin for the blood clots. It was interesting that the smart university oncologists were ignoring this symptom. I think I read somewhere that 20% of lung cancer patients actually die from blood clots rather than the cancer!

During the clinical trail I was getting CT scans & blood tests at a local cancer center that specialized in radiation therapy. The local radiation oncologist in my hometown also checked on me. One day he noticed how hard and swollen the forearm veins were where I was getting my infusions. He was angry – said the veins were going to be killed with the Velcade, carboplatin and gemcitabine – there was no reason for me not to have a port. Mentioned this to the oncologist at the big university medical center and within the week, I had a port. After completing the chemo-therapy, I had a CT scan that showed a blood clot where the tube tied into the large vein in my neck – we had to have the port promptly removed.

The local radiation oncologist felt that he could justify radiation (I think he stretched protocol a little) because it looked like I only had the primary lung tumor to the right upper lobe with a metatasis to the left adrenal gland. Other questionable areas had cleared up during the chemo-therapy. The tumors were smaller after chemo-therapy, but still viable. They had an IMRT (Intensity-Modulated Radiation Therapy) machine and he thought he could kill what remained of the two tumors. The IMRT shoots from different fields to lower normal tissue damage. The radiation therapy was no big deal and I thought I had the maximum rads (I guess surgery in those areas maybe out of the question now). I need to do more research in this area.

A follow up PET scan showed an increased SUV of 6.2 in the adrenal area that looked like the cancer was still kicking! I was referred to another medical oncologist. I wasn’t impressed with him – he said it was time for Iressa as a “last line defense.” I didn’t like the sound of “last line defense” nor the thought of relying on a drug that usually didn’t work in white males who used to smoke.

I had been reading about radio-frequency ablation. Adrenal tumors were one of the areas that the procedure was effective, so I started researching and calling. Found a cancer clinic with a doctor who had performed quite a few operations using micro-wave (as the heat source) for the ablation. The doctor thought I was a good candidate. I was in the hospital in the morning, out the next morning with a band-aid on my back and drove the 250 miles home while talking with my wife. Since then, I’ve been going back to my old radiation oncologist – a smart, caring doctor who is truly interested in helping me and doesn’t worry about other medical egos.

Three months after the ablation, a PET scan showed the lung and adrenal areas just looked like scar tissue. However, it also showed a lymph node with a peak SUV of 4 about 3/8” (8mm) in front of the aorta to the left kidney. Subsequent CT scan (fusion with PET scan) showed the node measured 11mm x 8mm. PET in June, 2005 showed the node had a SUV of 6.5. My doctor is observing. The lymph node is in a bad place being so close to the aorta. Nothing else is showing up and I’m still feeling pretty good. Any ideas or thoughts about what my next step might be with this lymph node would be appreciated.

From what I’ve observed, it seems that each specialty (radiation, medical or surgical) thinks their procedures are the only ones that can cure cancer. It sure seems like the medical profession needs to merge their expertise into a whole and treat the cancer patient with everything possible. The protocols should be scraped – each patient is different and a procedure outside of the standard should be considered if it may save, prolong, or improve the quality of a cancer patient’s life.

There are a lot of procedures available to patients that doctors usually don’t recommend. If patients do hear of a different procedure or option, many times it is too late. It seems like some doctors think their specialty has the magic touch and nobody else can cure cancer as well as they can. I’m thinking of things like:

•chemo-therapy after surgery for early stage lung cancer patients

•not ignoring radio frequency ablation

•surgery & radiation as adjunct therapy if you are only getting chemo-therapy

•radiation & chemo-therapy at the same time if the cancer is inoperable

•forget the protocols and throw everything possible at the disease – take a chance

•alternative medicine

•adjunct therapy along with standard treatments

•dietary & exercise changes

•encouraging participation and questions during treatment

•recommending supplements that may help treatment.

We need to be proactive in our treatment. I know this doesn’t apply to anyone reading this (because you’re reading this, you are proactive) but my doctor told me that most of his patients don’t ask questions or try to understand what is going on. He said his proactive patients usually do better than the ones that just sit back and expect him to have all of the answers.

The medical profession also needs to be more proactive. If a cancer is not responding to chemo-therapy, we know what the outcome is going to be. If the patient wants aggressive treatment for a stubborn cancer, they need to throw out the protocol and try something different while the patient is still strong enough to fight. Why can’t they try RFA two or three times on a large tumor? Why can’t they throw more than the maximum rads at a cancerous area. Why can’t they try a radioactive seed in a “dangerous to remove” tumor. There are certainly cancer fighting tools out there we know nothing about. If I’m going to die, I would like the option of trying anything that might help. Until we have cancer, we don’t realize what we’re up against. The medical profession owes us more than a cookbook protocol.

Don’t let nurses, technicians, clerks or even doctors interfer with your quest to get well. Ignore the assistances who are not helping you and find new doctors if you’re not getting the care you need.

There are hurtful people everywhere. Don’t let people who are having a bad day cause you to hesitate about asking a question or posting something on this board. I’ve had several private messages from people who have edited their posts of useful information or no longer post detailed information because they’ve had their feelings hurt or motives challenged. We all lose when this happens. Man, we all have bad days while fighting this disease. I recently noticed I was being very critical of those around me; naturally, I could not take back the hurt feelings I caused!

I’m taking/doing the following: (Please do your own research)

Prescription medications:

Lorazepam (Ativan) 1 mg tablet (taken before bed with 12 mg. melatonin).

Celebrex, 400 mg (200mg twice per day). [adjunct therapy – COX 2 inhibitor & helps the old acheeee bones]

Vytorin (cholesterol lowering (10 mg. Ezetimibe & 20 mg. Simvastatin) – 1 per day. [adjunct therapy]

Supplements/over-the-counter:

Aspirin, 325 mg. once per day with lunch. [adjunct therapy – blood thinner & COX 1 inhibitor]

Omega 3 Fish Oil – 8000 mg. each day (4000 in a.m. & 4000 in p.m.) [adjunct therapy]

Centrum Silver multivitamin/multimineral – once a day in morning

B-50 formula – with lunch.

Potassium Gluconate, 550 mg. per day

Coenzyme Q10 – 200 mg. per day. [adjunct therapy]

Selenium 100 mg. once per day. [adjunct therapy]

Grape seed extract, 100 mg – once a day. [adjunct therapy]

Melatonin – 12 mg. each night. [adjunct therapy] Helps me sleep better too.

Curcumin – 250 mg. once per day. [adjunct therapy]

BetaGlucan 60 mg. per day in morning on empty stomach. [adjunct therapy]

Cimetidine (generic Tagamet) 600 mg. per day (200 mg. in AM, afternoon & PM). [adjunct therapy]

Other:

1.About 6 cups of tea during day: Rosemary, Pau D’Arco, green, licorice root and others.

2.Drink lots of filtered & ionized water

3.Try to eat plenty of fruits & vegetables

4.Exercise for ½ hour or more at least 4 times each week.

To everyone on this board who has helped me in the last year or so. . . THANK YOU

[francesbean]

Wow. Thanks for this. I find it really helpful. My dad's oncologist is against alternative treatments during chemotherapy hence our dilemma. I personally would want my dad to take supplements along with standard treatment. I'll print this out for my mom to read.

I really hope you'll continue to do great! Best regards.

Sincerely,

Frances

[Don M]

Wow, Surveyor, what a well written and thoughtful post. I can see you are your own best advocate.

If I had a troublesome lymph node, I would ask to try avastin in combination with carboplatin and gemzar. I think avastin is mainly used to inhibit larger tumors by cutting off the blood supply, but I would want to try it anyway.

I also take supplements, even though I am(hopefully) cancer free now. I take cq 10 which is supposed to be a good antioxidant, and some of the others you have been taking. You definitely drink a lot more fluids than I. I walk a brisk mile every day, and walk up and down a flight of stairs at work.

I have just one lung now, and have been trying to maximize its use you might say. I work for the Forest Service and my job calls for going in the field about 40% of the time. I have gotten to the point where I can walk up 40 to 50% slopes and get by, but I don't think I am going to be productive on ground steeper than 60% anymore. My agency is offering a buyout, and I have applied for it. I could be retired by the end of September. I am 60 yers old.

I wish you the best in your fight against lung cancer.

Don M.. a fellow survivor.

[Tiny]

Thanks for the open, informative post. I especially like your idea of scrapping the protocols and going at this illness with a no-holds-barred attitude. Thankful that you are doing OK and hoping more options open up for you as needed. Hugs.

[Ry]

Very interesting post...thnaks for taking the time to encourage and help someone coming here needing hope and information.

Rochelle

[Patkid]

Suveyor,

Thank you for the post and the PM

we printed it out and are highlighting perrtinent paragraphs and taking to our onc.

God Bless you.

Pat and Brian

[bbays]

Thanks so much for the post. It was very informative.

God Bless,

Barb

[dadstimeon]

Great Post!

[Fay A.]

What you've written is very much appreciated.

[tnmynatt]

Thanks for the post. I totally agree with being informed and aggressive. We have had a similar experience with doctors only considering their methods of treatment. Several times we have had to bring up clinical trials and radiation as option for Charlie to the chemo. oncologist. The guy has been very receptive and helpful...but, we had to bring it up. Don't get me wrong, we are very happy with Charlie's onc. He has been very aggressive! Thank God.

Glad to hear of you story and how well you are doing. Take care. You are added to my prayer list.

P. S. My uncle was a surveyor for the Feds. many years ago. Always sounded like fascinating work if you like the outdoors.

[bunny]

that was an amazing, informative post. thank you, I have been trying to gather information on what my mother can do after her treatments, whatever they end up being (there's almost no way she can handle chemo now, but I guess we'll see). you just did it for me. you're a gem.

xoxo

amie

[gail p-m]

What an interesting and informative post. Lots of food for thought here. You do have to be your own advocate with this disease, don't you.

All the best to you.

gail p-m

[Leslie221]

Thank you for this wonderful post. I wish I had read it when I was first diagnosed. I know many, many people will benefit from reading your message and suggestions. Wish I could shake your hand in person!

I'll think of you every day and wish you well, Surveyor. (I was a life-long Californian until 4 years ago and feel a special affinity for anyone in my home state!)

Leslie

[Kaffie]

So many new people joining the forum will benefit from your post as well as those of us already here. I often forget things and have to go hunting.

Thanks for taking the time to write all of that.

Kathy

[eppie]

I taught my students this week. I must have done a good job because every single one got it correct on today's assessment.

So I was thrilled to read this post by you, Surveyor.

You brought peace to us today. We always drank ROsemary tea with my grandmother. I always thought it was great and now I am even more convinced. Thanks,

Joining others in prayer tonight for healing and power against this cancer,

Eppie

[melindasue37]

The time you have spent to write this post is appreciated!!!

I am printing it out and sending on to my Mom.

Thanks SO much!!

Melinda

[ma's kid]

Thank you so very much for taking the time to post this. I am going to print this out for my mom. Many prayers for you.

Libby