Hello ...

[fighting4mom]

This is my story. I am the primary caregiver for my 71 year old Mother who just diagnosed with NSCLC - Stage IIIB (less than a month ago). I imagine our experience has been similar to many. In this past few weeks we have been to see many doctor, my Mom has had the standard battery of tests and we are commencing treatment in about a week and a half. Until today, I have merely been an avid reader of many of the stories and wonderful pieces of advice found here – and I can’t say enough about what a truly wonderful resource – and refuge – this board has been. Until a routine x-ray, no one had any suspected the cancer. Thankfully, my Mom is pretty healthy – only slightly elevated BP and cholesterol – but she also does have macular degeneration as well (preventing her from driving). Its hard for me to completely comprehend the “why” (which I know I shall never know) she has been selected to receive these two unfavorable conditions, but I know our Lord is in control so I’ll not question that any farther. I decided to write today – as we get ready to start down the path of treatment – to reach out and thank each one of you who has contributed their messages and advice and hope that we have some good news to share down the road. My Mom will have radiation treatments 5 days a week and chemo (carboplatin and taxol) 1 day a week – each for 6 weeks. I pray each day that her strength remains, she doesn’t loose any (much) weight (she weighs just 105 now) and other side effects are minimal. Thank you for any suggestions or advice you may have for us. My sincere appreciation to all of you – and especially Rick & Katie – that this organization exists!

[Caren]

Hi there

I'm glad that after browsing the boards you finally feel ready to share your experiences with us.

Wishing your mum the best of luck with her upcoming treatments.

[jaminkw]

Welcome to the site. I'm glad we've been of help while you struggled through that dx and treatment plan process. It's probably one of the most difficult times.

I hope your mom has my problem, I weighed about what your mom does when I started and have gained 15 pounds since dx. I was also considered quite healthy by the doctors with only some bp and cholesterol elevations like your mom. Believe me, it does make a positive difference in the ability to handle treatments. I did carbol and taxol but with the addition of Avastin. Each case is different so treatment schedules vary but I didn't think the chemo was as bad as I thought it would be. The problems I did have were with the Avastin which your mother isn't doing. I can't speak to the radiation as I have not had it but am sure others will come in with their experiences and recommendations for dealing with any side effect.

You have every reason to be hopeful. I am 65 and have been surprised at how well even older folk on the site have done on treatment. I am almost two years out from my dx and doing very well.

Thanks for sharing with us and keep us posted.

Judy in Key West

[Patti B]

Welcome-

Glad you found us but of course sorry you found the need to.

I hope your mom has a relatively easy time with her treatment - I cannot speak of radiation but I have never really had any side effects from chemo and I was originally on Carbo/Taxol/Avastin. And I too, gained weight - I weigh more now than any time in my life except when I was pregnant. Its the joke when I see my onc - the nurse will say - any problems eating??? And I tell her - look how much fatter I am than last time - LOL!!!

Lots of luck and please keep us posted on how your mom is doing!!!

Hugs - Patti B.

[fighting4mom]

Oh Ladies, thank you ever so much. I can just feel the support and well wishes! I return to you hugs, warm thoughts and strength.

From what I have read and been told by the radiation oncologist, Mom will have an effect called esophagitis ... explained as a condition kind of like heart burn or a sore throat but in the esophagus that lasts from about week 3 through 6 of treatment. We're told that neither very hot nor very cold liquids or foods are tolerated. Mom is a BIG iced water fan so the prospect of tepid water to drink drew a big sneer from her (she is keeping her humor through this, thankfully). So I am hopeful that issue doesn't prevent her from wanting to eat.

Here's a kind of scary question -- if we never ask, will the onc mention any kinds of stats or prognosis? Though it isn't my decision, I would almost prefer if he didn't. So far he says "very treatable" and we'll evaluate after the 6 weeks of treatment. Of course I have read a lot -- she hasn't due to her eye condition. I don't want to hide anything from my Mom but I don't want to volunteer any negative info. Any suggestions there?

[cat127]

My sister is 3b also. Had radiation to the tumor and the mediastinum (7 weeks for a total of 68.5 Gy), along with weekly carbo/taxol for about 16 weeks. Esophagitis was never a problem. She had little trouble through the whole treatment and much to her chagrin, she didn't lose an ounce. Here's hoping your mother does as well, it is not an uncommon story so she very well may! Kelly said she did alter what she ate as some things bothered her throat, but for the most part, it was life as usual. She even joked that she never felt better than she did on chemo day - all the premedications made her feel really good. We often planned things for that day knowing how well she felt.

Good luck!!

I am a bit different from most folks here about stats - I'm a medical scientist, I'm all about numbers. But I think a good rule that I've adopted when dealing with my sister is that I never lie to her, but I also never volunteer information. If she asks me something, I answer honestly but with perhaps the best spin possible. She knows the stats for 3b, but we also were quick to emphasize that she is not a statistic and that stats come out of a very wide range of information. And 5 yr survival data is by definition, 5 yrs behind. She has learned a lot about bell curves from me through all of this. And of how we are working very hard to put her in the far right tail of the bell curve. So far, so good.

If your mother hasn't asked, don't volunteer. That would be my advice. I see your question was about the dr. From what I've seen here, doctors seem to run the gamut of styles. Kelly's doctor was NOT going to say anything. She ended the appointment saying - so what are my chances. Honestly that caught me off guard. By nature of my job, I know she knew I knew those things, but she never asked me in the weeks prior to the appointment. When she did ask, her Dr was hesitant to say, gave her many caveats as to why maybe the info isn't all that relevant, but then said that since she could go home and google it, if she wanted to know he would tell her. And he did, with many qualifiers and in the best way I could have thought. He's a gem and we are lucky to have him. But I read people here whose experiences weren't as good. So it is hard to say about your mother's doctor, if he will volunteer it without you asking. Perhaps you could speak to him first and say that you don't want to hear numbers, you just want to take it one step at a time.

[Patti B]

Hi again-

Can't say a lot about the radiation because I never had it but I do know there are things they can give her to help her. I have read on these boards here about something called "magic mouthwash" that the doc prescribes and the pharmacist mixes up that will help with her throat.

Now......I am a huge advocate of NOT asking about prognosis. I did unfortunately and almost fell off my chair. I was told 12 months tops and now I am in month 33!!!! Stats mean nothing - your mom is not a statistic!!! Even though I knew he didn't mean 12 months to the day it was really hard getting up out of bed that day!!!! None of know when we are going to leave this earth so I believe in just letting that one go. But everyone is different and some people want an idea.

Once again, good luck with your moms treatment and keep us posted. She is so lucky to have you by her side!!!

Hugs - Patti B.

[Donna G]

Welcome . So glad you found us. I started my journey with chemo and radiation. I pray your Mom's tumor responds as nicely as mine did--it died! You can read more of my story by clicking below.

I see you come from Charleston, SC. I lived there a couple of years when my husband was in the Navy. Nice place.

Please keep us posted on how she is doing. It is so good that she has a loved one to help her.

Donna G

[recce101]

About asking for a prognosis, I agree with Patti at least 200 percent. Don't! There's no way you can get useful information out of that question, even though some doctors will try to provide an answer (i.e., make a guess). Statistics are based on the average/mean of a very large group of patients with a similar diagnosis, and there is a huge amount of variability from one patient to another. They may be useful to bureaucrats and insurance executives in deciding which treatments to cover, but they're meaningless to any individual patient or caregiver. If you want to read the opinion of a leading lung cancer oncologist, look here (he posted it just yesterday):

http://cancergrace.org/forums/index.php ... 9#msg10449

Now that you've had an introduction to cancergrace.org (GRACE — Global Resource for Advancing Cancer Education), I hope you'll make it a regular stop during your Internet travels. Aloha,

Ned

[jstdzy]

Hello,

Welcome aboard. I have to agree with everyone else. Don't pay any attention to the statistics. That is what is so strange about cancer it responds so differantly in each of us. People that should have years are gone in a few months and vice a versa, you just can't really call it. It just depends on how Mom responds to treatment. I didn't have radiation I had surgery and chemo. I gained 50 pounds on chemo! I was mad! Oh well. Best thing I did was eat every couple of hours, my stomach would get soooo upset if I let myself get empty. How about some differant flavors of green tea with honey for Mom? Just a thought! Keep us posted! Prayers are on the way!

Dana

[RandyW]

I think every patient has outlived their doctors prognosis, so dont put much faith in to 6 months or whatever they tell you if they do!!! Personally did not ask did not care. We fought for every day we got and were happy to get that day and the next day!! More time to live and less to think about not living !!!! Dont ask dont tell is my thoughts !!!!

[brokenarrow]

Welcome!

Glad you joined us. Yes, this place is a great resource and refuge. In addition to the informative stuff that you can find here, there's a genuine family atmosphere here, sparked by common adversity and cemented with open hearts.

About prognosis... I'm a survivor of stage IV NSCLC. My original prognosis was "Inoperative, incurable with chemo alone, and radiation an unlikely answer". So much for prognosis, eh? Although prognosis seems so important in the first hours and weeks of diagnosis, focus on the outcome robs the person with cancer and family of so much life unnecessarily. Regardless of prognosis, living during the battle with cancer is so much easier than just surviving the battle.

For me, spiritual and social health became more important than my physical health. I quickly learned that the less important my physical prognosis became in my head, the better I did through the trials of the battle. Things surely became uncomfortable during treatments and physically there were some rough days, but I found that between my care givers at the cancer center and knowledgeable people here, there were multiple good answers for every single physical inconvenience I suffered.

Of course, no one can tell you exactly what your own best response is in your own unique life. That's for you to decide. To be sure, we'll try, and you can listen, or not. One thing is sure though. We do understand when you want to let it all hang out.

Will

[ts]

Really lovely that you are taking good care of your Mom. Please also remember to take care of yourself. Caregivers are awesome! It's a tough job - we can be difficult at times, withholding our feelings, masking side effects, or just crying when you least expect it. We get all the attention and you do all the chores. Thank you in advance. I had moderate plus esophagitis from radiation - never stopped me from eating ice cream. Hmm, no wonder I didn't lose much weight. And yes, keeping food in the belly during chemo is important, as is plenty of fluids.

Bests

[recce101]

Will said:

I quickly learned that the less important my physical prognosis became in my head, the better I did through the trials of the battle.

I haven't heard it put that way before, but I think that's very true.

Ned

[SandraL]

Hi there. I am sorry to read about your dear mom. I am glad that you have found this site and that it has been helpful to you. It has been a godsend for me and my journey. I was also stage 3b at diagnosis. My advice would be to make sure she drinks lots during her treatments. Even if she doesn't feel like eating. Keeping hydrated is so important during chemo. Also, please take precautionary measures (senokot) for constipation. It really is awful and can be avoided.

I am sending prayers that your mom's treatments are successful. Please keep us posted.

Sandra

[fillise]

Welcome!

I agree that prognosis information is not very useful. We didn't ask at the beginning and I'm glad. Mom never felt she had an expiration date. She prefers to set positive goals. The first was to make a church retreat 10 months after he dx. Now she has set a goal of seeing her grandaughters graduate from high school and college next June.

The fact that your mom is in relatively good health should serve her well during treatment. Mom found her treatmetns not to be as bad as she feard--especially the chemo.

Hang in there and keep us updated so we can keep sending good thoughts for your mom and for you!

Susan

[LovesLife]

I am so sorry that you and your mom are having to go through this - you are a wonderful daughter to be by her side during this.

I haven't anything to offer regarding treatment; however, I just wanted to welcome you here and wish your mom the best in her upcoming treatments.

Linda

[fighting4mom]

Thanks again - to all of you. Having just been an observer until this week, I now feel so 'connected' to the community and it is a good, warm feeling. I really appreciate all of the sharing and having the chance to reach out and chat, question or just vent as needed. You all are truly wonderful people.