Stage 3B Non Small Cell Lung Cancer - Need hope

Ex_Rock_n_Roller said:

Your mom's treatment plant is identical to mine +1
I was diagnosed April 2010 at the age of 59 and staged 3B, mass on left side (high, in bronchus) and lymph nodes affected on both sides of my chest. They put me through exactly the same regimen as recommended for your mom. Let me get to the good news first: I got through the treatment with no side effects I couldn't handle (detail below), and have been NED and off medications of any kind since July 2010. I am following the same excercise program I did before diagnosis, including hiking up mountains at above 8,000 feet elevation, and with occasional ups and downs involving congestion, I've been feeling steadily better since treatment ended. Just last week I had a friend's mother, whom I've known for forty years, tell me I looked better than she'd ever seen me in my adult life (this woman is definitely not known for feel-good pronouncements), and looking back through my photo albums, I gotta say she's right, at least as regards the last five years.

Long story short, even though the stats stink, at your mother's age and based on my results, I would say she should not even consider avoiding treatment. She CAN do this. Even if my next scan (Feb. 8) should turn up with bad news, I would have done the treatment. I would have done it twice over.

Side effects and recommendations:
===================================
(1) Burnt esophagus that made swallowing even plain water painful. This didn't hit me until relatively late in the treatment, maybe 3/4 of the way through. If her radiation pattern crosses the esophagus, this will probably happen. REC: Start eating smooth and frictionless foods right away, even before she needs to. It may delay onset.

(2) Grinding fatigue. The radiation WILL do this to you; I don't know of anybody who's been an exception. "Hit the wall" period will probably start at about four weeks, maybe a little later. FYI, my profile pic was taken right about then, so you can function with some effort. REC: Rest as often as possible. Luckily, I was able to sleep like a baby at night, all the way through.

(3) Nausea. I had only a hint of it a couple times. I still have a virtually full bottle of pills they gave me before starting treatment. REC: Take the pills when you need to. They've obviously made huge strides in this area.

(4) Low cell counts. I had nothing that interrupted my treatment schedule.

(5) Infection. I had none. STRONG REC: Stay the heck away from people as much as possible throughout the whole chemo regiment, so as to miminize chances of catching something.

(6) Hair loss. The second round of etoposide will do it if the first didn't. Comes with the program. REC: Purchase cool head covering of choice.

(7) Dehydration. Didn't happen to me, but I checked myself in on my own recognizance near the end of radiation to get my tank topped up with fluids, because I didn't think I was taking enough in owing to the roasted esophagus. Hour and a half in an easy chair; no big deal.


I'm sure I've left something out, and feel free to ask any questions, but let me reemphasize that she CAN get through this in excellent shape. All the very best to your mom!

dennycee said:

So glad X-R-R got back to
So glad X-R-R got back to you so fast. I wanted to go over some of the potential problems but ran out of time. I can't really add much to what he wrote, I would like to emphasize how important it is to keep hydrated. I kept a water bottle on either side of my bed in case I was too tired to turn over (yes there were some days during treatment when I was that tired). Also, the decadron made me very hungry so I kept snacks near the bed that were soft and had a high water content (fresh fruit or a cup of canned peaches or fruit cocktail). Eating 5 or 6 small meals a day really helped. I was truly fortunate enough to have 4 rounds of chemo and keep my hair!

One other thing- if your mom has osteopenia or osteoporosis, get her on fosamax or something similar as I had some broken bones due to osteo. Steroids, chemo & radiation can be very hard on bones.

Nothing has stopped me from getting back to the business of living. I have traveled more than I ever did. I have taken up pottery, volunteer at community activities and I am searching for a part time job.

ColoradoDani said:

There's lots of hope
Well, it's hard to add any more to all this great advice, but my husband was diagnosed stage 3B a year ago. He's NED and went skiing today. He, I and our sons (13 and 6 years old) are living full, active lives--TOGETHER. He had the exact same treatment as Ex Rock n roller and the chemo and radiation was totally worth it. Sure, there's total anxiety with scans, etc. but he's here, having fun, with us, and we'll take that for as long we can.

z said:

HOPE
deltafun from the inspire web site posted this recently. I don't know what type of cancer. There is a lot of hope on the Inspire web site, so I visit both CSN and Inspire. If you go to inspire you can read deltafuns profile and see what type of tx she had as it relates to your moms cancer. I hope this helps. Lori


We are still in shock. We met with my oncologist yesterday to review the results of my Pet scan, he told me that there is NED. Wow now that was a shocker. I was diagnosed last March with stage 3b lung cancer and had a 9.6cm tumor on my left lung and now it's gone. There is hope, I didn';t think so at first but reading all the post on this site gave me hope.

Thank you all!

deltafun said:

Treatment plan
I wanted to post more info this morning but had a problem with the website. FYI My treatment plan was 37 rounds of radiation and 8 chemo treatments carbo/Taxol. There were times that I felt I didn't want to live like this but today I am feeling great. Everyone on this site knows what you are going through and how much your life changes once you are told you have cancer. They will be here for you when you need them! I was diganosed with stage 3b None small cell lung cancer.

hebadekei said:

Hi, about your husband,
Hi, about your husband, how's going? Hope he is recovering very well, because this is the only hope...we need to find some real model to make us believe we can fight against the cancer.
- normal body temperature

Ex_Rock_n_Roller said:

Your mom's treatment plant is identical to mine +1
I was diagnosed April 2010 at the age of 59 and staged 3B, mass on left side (high, in bronchus) and lymph nodes affected on both sides of my chest. They put me through exactly the same regimen as recommended for your mom. Let me get to the good news first: I got through the treatment with no side effects I couldn't handle (detail below), and have been NED and off medications of any kind since July 2010. I am following the same excercise program I did before diagnosis, including hiking up mountains at above 8,000 feet elevation, and with occasional ups and downs involving congestion, I've been feeling steadily better since treatment ended. Just last week I had a friend's mother, whom I've known for forty years, tell me I looked better than she'd ever seen me in my adult life (this woman is definitely not known for feel-good pronouncements), and looking back through my photo albums, I gotta say she's right, at least as regards the last five years.

Long story short, even though the stats stink, at your mother's age and based on my results, I would say she should not even consider avoiding treatment. She CAN do this. Even if my next scan (Feb. 8) should turn up with bad news, I would have done the treatment. I would have done it twice over.

Side effects and recommendations:
===================================
(1) Burnt esophagus that made swallowing even plain water painful. This didn't hit me until relatively late in the treatment, maybe 3/4 of the way through. If her radiation pattern crosses the esophagus, this will probably happen. REC: Start eating smooth and frictionless foods right away, even before she needs to. It may delay onset.

(2) Grinding fatigue. The radiation WILL do this to you; I don't know of anybody who's been an exception. "Hit the wall" period will probably start at about four weeks, maybe a little later. FYI, my profile pic was taken right about then, so you can function with some effort. REC: Rest as often as possible. Luckily, I was able to sleep like a baby at night, all the way through.

(3) Nausea. I had only a hint of it a couple times. I still have a virtually full bottle of pills they gave me before starting treatment. REC: Take the pills when you need to. They've obviously made huge strides in this area.

(4) Low cell counts. I had nothing that interrupted my treatment schedule.

(5) Infection. I had none. STRONG REC: Stay the heck away from people as much as possible throughout the whole chemo regiment, so as to miminize chances of catching something.

(6) Hair loss. The second round of etoposide will do it if the first didn't. Comes with the program. REC: Purchase cool head covering of choice.

(7) Dehydration. Didn't happen to me, but I checked myself in on my own recognizance near the end of radiation to get my tank topped up with fluids, because I didn't think I was taking enough in owing to the roasted esophagus. Hour and a half in an easy chair; no big deal.


I'm sure I've left something out, and feel free to ask any questions, but let me reemphasize that she CAN get through this in excellent shape. All the very best to your mom!

ecross23 said:

Update
My mom is now 4 weeks into her treatment. Today she started her second cycle of chemo. So far she has been doing really well. She lost her hair after about 3 1/2 weeks. About a week after chemo ended her white blood count went down but quickly went back up after a shot. She amazingly still has her appetite. She is really dreading this second round of chemo. She had one rough night during the first round with chills. But other than that just fatigue and a bit of nauseau. Her coughing has gotten worse. Which she says is calmed by a cigarette. She says the doctor says it's ok to still smoke in moderation so she still continues to smoke 3-5 per day. I know this is a lie and I want to knock her upside the head and tell her this is what got her in this mess to begin with but I can't add to her stress.

9 days of treatment left and then we wait 4-6 weeks to repeat the catscan. Was surprised to hear from my mom that no matter the results that this would be her only treatment. Anyone experience this? I thought if the tumor shrunk they would move on to another cycle. Then my dad says they are just trying to improver her quality of life. Are they not telling me everything? Just not what I expected to hear.

Thanks

Eva