Hello

[janwalkerimages]

Good morning,

I am new to this site. My husband, Bill, was diagnosed with cancer for the third time the first of this year. Previously, he had two (2) go-arounds with prostate cancer that ultimately cost him his bladder leaving him with a urosotmy. We were counting down the 5-year all clear when he was diagnosed with non-small cell lung cancer. He had the middle lobe of his right lung removed in March @ Mayo and is presently undergoing chemo locally (I use the term loosely). We go back to Mayo in August to commence radiation therapy for 6-weeks and then we begin the waiting game again. His diagnosis was initially Stage I as the scans didn't show any mets to the lymph nodes; however, once the surgeon was inside, they discovered 2 of 11 lymph nodes involved between the lungs so he was upgraded to Stage IIIA. Since beginning this particular journey, I have become involved with Penny in Canada whom is one of the primary instigators of Penniesforcancer.com. I have donated images to Pennies for them to sell for fundraising but I would like to see if there's something that I can do for non-small cell cancer. Please be aware that my husband travels 40 miles to the nearest hospital for his chemo. We are definitely out in the boonies! Would love to hear from others whom are as frustrated at watching someone they care about going fighting this battle.

[Kasey]

A very big and warm welcome to you, jan! You and your dear man have been through so much already! I am sorry to hear that ~ AGAIN ~ you are to face tx. Right now I have no words of wisdom as to how to cope, BUT if you check my profile you will see that I was dx 3A OR 3B.........never really had a definite..................and here I still am. You know this road only too well, but this time allow us to help carry some of the load for ya. Many here will offer you hope, help, support............whatever it is you may need.

Kasey

[janwalkerimages]

Thank you. It is very frustrating to watch him go through this and feel that there is so little that I can do. It is also frustrating to see so little information available. When we were battling his prostate cancer, I was appalled at how little information was available compared to breast cancer but lung cancer is ridiculous. I guess it's because breast equates with nurturing babies - life - and also because women have been so very good at creating awareness of the issue. Unfortunately, there aren't nearly as many survivors of lung cancer to generate awareness as there are breast cancer survivors. I am hopeful for his prognosis even though the ACS stats are only 40% 5-year survival rate. Those stats include 85 year olds whom previously had cancer and pass away due to heart attacks, they don't differentiate between the quality of medical care (and I feel that Mayo is one of the best available), and they also don't take into account the general overall health of the individual. While I'm realistic it doesn't dispel the hope and the belief that we have a fighting chance to defeat this monster. One of his brothers had lung cancer twice and is now 85 years old and going into the office every day.

[Don Wood]

Welcome! Yep, you do have a fighting chance. Your husband's brother's case gives a lot of hope for your hubby. My wife is Stage IV and still going after 3 1/2 years, so that gives more hope.

I think being the primary caregiver is one of the hardest roles there is, but it is also one of the most rewarding. You have many people on this website who understand that. Hang in there with us.

I am a 10-year survivor (two bouts) of prostate cancer, but my wife got the lc. Sorry your husband had to endure both. Let us know how we may support you, and keep us posted. Don

[janwalkerimages]

Thank you for the support. I think the biggest thing is hearing stories of survivors who are real people and not just numbers as it reaffirms my belief that we will beat this monster once again.

My son is uncomfortable discussing the issue. We're separated from Bill's siblings and his two (2) daughters by distance. Bill's ex-wife is living with one of his daughters because she isn't financially responsible enough to support herself. His other daughter also lives 4-hours away in KC with her husband and four children. We don't want to be a burden to them and we're constantly reassuring them both that he's doing even better than expected with recovery from the surgery and undergoing the chemo treatments.

One of the most difficult things that I'm having trouble with this time around is believing. The first two times I put my faith in God and just knew in my heart that we would end up on top. Then, just when it seemed safe to start making plans again for the future, here we go again. I find myself very angry this time around - not at Bill but at things that I can't even reach out and touch - the situation in general, God for not sparing us after everything that we've already been through, the cancer. I don't like being angry but can't seem to shake it. Suggestions?

I'm also a doer. I don't like feeling helpless. I've made a connection with Penny and penniesforcancer.com and, while funding is necessary for research to beat SCLC, I also want to do my part for NSCLC. Will have to keep working on that one.

[Don M]

Hi.

I would like to welcome you to the boards too. I know how frustrating and disheartening it is to deal with more cancer. I am kind of out in the boonies myself. I travel 25 miles for my chemo treatment. I just recently completed 6 weeks of image guided radiation therapy at Swedish Caner Institute in Seattle for my third cancer. That is about 160 miles from my house, so I stayed with my son and his family who lives in the area. The intent of the radiation was to kill the tumor while conserving healthy lung tissue. I am doing the chemo as a follow up.

Your husband might want to inquire to having a targeted form of radiation if the intent of his upcoming treatment is to radiate what they can see. Using conventional radiation sometimes can cause pneumonitis to occur in healthy lung tissue. There is still a chance of pneumonitis with targeted radiation, but it is greatly reduced.

I see that the Mayo Cancer Center in Rochester has a technique called intensity modulated radiation therapy (IMRT). This is a targeted form of radiation similar to what I had, except that it does not have real time imaging capability that IGRT offers. The most advanced IGRT system runs on the Electa Synergy Machine. Varian accelerators also can do IGRT, but they don’t have real time imaging capability while the Electa Synergy accelerators do.

Cyberknife is another form of targeted radiosurgery that is the most accurate.

There are 2 centers in Missouri that have cyberknife capability:

Mercy St. John's Cancer Center

2055 South FremontSpringfield, MO, 65804USA

I see that the above center also has image guided radiation therapy, probably using the Varian system.

Saint Louis University Cancer Center

3635 Vista at GrandSaint Louis, MO, 63110USA Phone Main: (314) 268-7015

I could not find anything on the web site for St Louis that talks about other forms of targeted radiation therepy, but if they have cyberknife, they must have other methods too.

I would prefer cyberknife because it is the most accurate and can usually be completed in 3 treatments per tumor. The treatment includes placement of little metal rods or bee bees around the tumor so the robotics can track it as one breathes. I did not do it for my tumor, because I have just one lung left, and I did not want to assume the risk of a collapsed lung. My treatment using IGRT did not require penetration of my lung, and was nearly as effective.

Here are some links for cyberknife:

http://www.accuray.com/SiteLocations/index.aspx

http://www.cyberknifesupport.org/forum/default.aspx?c=4

The first link is to the manufacturer’s web site. It will take you to a page where you can enter a state and find the cyberknife centers available. I cut and pasted the above centers from that page to this post.

The second link takes you to a message board where you can ask radiation oncologists who practice cyberknife surgery questions. They are very helpful and respond within 24 hours.

I suspect that the Springfield Center is closer to you.

Here is another link to the Electa Synergy website that describes IGRT:

http://www.elekta.com/site_dbase.php?fo ... _id=101495

I hope your husband’s treatment goes well, and that he nails the cancer.

Don M

[Frank Lamb]

Welcome to our support family.There are many knowing and caring people here that can offer support and answer the many questions.

There is life after diagnosis.I am stage 4 and am over 3 years out from diagnosis and surgery.

[Donna G]

Just want to say welcome Jan. It is good that your husband has you at his side. Keep us posted.

Donna G

[janwalkerimages]

Thank you for the link-up. Will definitely have to share the information with my husband. Additionally, it helps to hear from long-term survivors. I love living out in the boonies where everyone waves at everyone else as they pass them on the road whether they know them or not and it's a constant fight to convince the wildlife that they don't need climate control!! When I'm at home this weekend I'll post some of the images or you can swing over to pennies and take a look at a few. Last weekend was rough because it was a double-hit treatment with Cisplatin/Navelbine combined but this week is an "easy" week with just Navelbine so we're going to the horse races in Illinois on Saturday (his idea since he's only been once in his life). Going with another couple whom are friends from down the road. Spending the balance of the 4-day weekend just enjoying being together except for when we "go into town" to see the fireworks display since we won't have the grandkids this year.

[janwalkerimages]

And looking pretty darn good for Stage IV! What kind of dog? We have a 14-year-old Heinz 57 (Sadie) and a 3-year-old English Setter (Max) - my husband's pheasant hunting buddy. We're hoping that he's (Bill - not Max) is feeling up to pheasant hunting when the season starts the end of October since he will be just 3-weeks done with the radiation. We're trying to plan for the best.

Current plan is for us to stay in our 5th-wheel camper while we're at Mayo in Minnesota. We'll take the boat and maybe rent a dock slip just in case he feels up to it. We'll have to board the "kids" for the 6-weeks we're in Minnesota because the camper is only 24' so that we can tow double with the boat and not exceed legal towing limits. I'll certainly miss them.

What kind of treatment are they pursuing with you or are you considered in "remission"? Do they have remission with lung cancer? I've simply been concentrating on CURE and haven't thought to ask prior to just now.

[janwalkerimages]

Thank you Donna.

[Don Wood]

It's okay to be angry, even at God. He can take it. it is natural to be angry. You do need to vent though as you have done here, and get through it. Turn the anger into positive energy. Get someone you can talk with that is not directly involved. I have used several people, and my wife has a buddy she uses. Take care. Don

[ma's kid]

Jan,

Welcome to the board and please keep us posted on how you both are doing.

Tons of info and support here and so many people that truly care.

Libby

[dadstimeon]

Welcome Jan, Rich

[Snowflake]

Jan,

I would suggest a hobby, something that involves physical activity, like caber tossing, alligator wrestling, base jumping, bar fighting or karate to name a few. You need something that doesn't really call for thought (cuz there's that damn pity pot that likes to have someone sittin' on it) and tires you out so your mind can't wander too much.

Tai chi is low impact and involves movement. If you prefer to remove yourself mentally from issues, try yoga and meditation.

I have a counselor I see about every three weeks and so does my husband. It helps with the things you need to get out but don't necessarily want to share with your loved one - like the fears. Counseling also helps to broach those subjects in a healthy way.

One thing, please don't re-hash all the numbers here. We all know them and we all live with them and do not need a trigger to having them dance in our heads and keep us awake. We're right here on the path with you, please don't remind us of what is lurking in the dark - it still keeps me up and I'm over three years out.

Good luck in your journey.

Becky