Sister Dx NSCL

[pamlee1]

Just stumbled across this site and happy to see it's very active. My sister who is 66 was dx with non-small cell lung cancer about 5 months ago. At that time the tumor was 3x3 cm with some lymph node involvement but no mets anywhere else. Not operable though. She went thru 7 weeks of daily radiation and weekly chemo and after that ct scan showed major reduction in tumor size and still lymph node involvement but lessened. She started to experience hip pain and subsequent tests showed met to hip and also small spot on spine. What a journey! It seems like all is going well then you're hit with something else. My sister is in pretty good physical health and has endured treatment to date with not much in the way of sidebad side effects, just tingling in legs and some stomach upset. She's now starting 4 more chemo treatments 3 weeks apart but obviously the bone met is not good. She too was a smoker who quit the day she was diagnosed. She has adenocarcinoma in right lung. Anyone else out there started treatment with no mets then had them appear? It's so discouraging; I find I try to keep her spirits up but I'm so upset to see her go thru this. I spend a lot of time researching things on the internet just to be sure I know enough about this disease as she just has trouble grasping everything. Would love to hear from others.

[Donna G]

Welcome Pam. Glad you found us. Your sister is so lucky that she has you to help her. When you are going through this you really need someone. I was lucky that my husband went to appointments with me at first, was able to get off from work. He took notes and searched the web to verify what we had been told. I was so afraid and overcome sometimes I could not "hear" what was being said. Most of us fighting the fight get overwhelmed and need "happy pills" to give us a lift, antidepressents. Someone will jump in about mets, I am sure. Please keep us posted. Donna G

[shineladysue]

Welcome Pam,

I'm glad you found us. You have found a site of many compassionate people helping one another cope with this disease. Even though every one has a unique case, there are many similarities in treatments. There's lots of information and support to be found here, as well as hope.

You asked a question about mets appearing after treatment and the answer is yes. Treating cancer is an ongoing process of trying to find the treatment that works best with the patients body. In the meantime, new mets can appear and there are various forms of treatment for different for all kinds of mets. If you read over the profiles and posts at this forum you will soon begin to learn more of what you might expect. If you have a specific question, there is nearly always someone here who has experienced it and or someone will give you links to help. Again, welcome to the site we all wish we didn't have to belong to, but are thankful exists.

Sue

[rogfam]

Pam, just wanted to say 'welcome' and this is a wonderful site with lots of support. it's a God send.

Keep the faith, never loose hope, and pray, pray, pray.

God is good.

I'll be praying for your sis. and you.

Christy

[janetg]

Hi and welcome to a great site. I'm assuming that all the tests required to ascertain whether there were mets (bone scan) were carried out at the time of diagnosis. Ron's first symptom that something was wrong was pain in his back which didn't subside between October 2003 and March 2004. When he finally had a catscan of the back done he began having trouble breathing. Before we got the results of the scan he was admitted to emergency because of his breathing. An xray indicated pleural effusion. That's when the nightmare began. The radiation took care of the met to the spine after only 5 treatments.

Would your sister's physician have any input on whether the met might have been there but was missed? I don't know if that's possible but I would ask.

Are there plans to do radiation to the spine and hip to reduce pain?

Hope she does well. A positive attitude really makes a difference.

All the best to you and your sister.

Janet

[J.C.]

Pam,

Hello and welcome, if you are able to go with your sister

for a medical appointment you could make list of questions

to ask the oncologist or doctor that way you you will not leave

anything out.

Many people will answer the questions in your post.

Good luck to you and to your sister.

J.C.

[Don Wood]

Welcome to the site, Pam. your sister is close to my wife's age, and she has NSCLC, Stage IV, and 29 months from diagnosis. So there is plenty to hope for. My wife had multiple bone mets at time of discovery. She has gone through chemo twice and multiple radiation treatments, and still perking. It would be helpful for you to put your sister's cancer bio at the bottom of your sheet, like you see on mine and others. That way, when you post, we can review the history in light of your questions and comments. Plenty of info and support here. Glad you found us. Don

[cindi o'h]

Hi Pamlee.

welcome to this site.

I was told by the onc. that lc is treated as a chronic illness similar to diabetes or heart disease. They just keep treating whatever happens to show up.

I am two years/plus clean from advanced lung cancer. Not perking too fast, but perking nonetheless.

Mets with cancer are not uncommon. Good luck to sis with her treatments. So glad that you are a "good" sister.

Cindi o'h

[Patkid]

Welcome, Pam,

I am very new, also. My husband is dx w/ nslc. We were completely shocked by the incidental finding on an Xray.

I have only posted a couple times so far, but eveyone has been lovely, and so supportive. This site is a gift of God's Grace.

Hug your sister for us.

I lost my younger sister at age 50 to SCLC in 2001 . She was very very sick before she was diagnosed correctly and only lived 18 months after the dx.

Brian (my husband) is very healthy and I am hopeful that he will be able to put up a good fight. So far chemo is going fairly well.

Next round starts 3/23.

We all care................count on us.

[dadstimeon]

Welcome Pam and sorry to hear about your sister. Best place with the best people for caring, sharing and knowledge. Rich

[Ry]

Welcome...I hope your sister does well with her treatments. She is lucky to have you looking out for her.

Rochelle

[MelanieLR]

Hi Pam,

Welcome to our group. I'm incredibly sorry you need to be here but you're really in a great place. In my case, they found the mets before they found the LC so I'm sorry I don't have great input for you there.

The biggie is to keep up the postiive outlook. It's amazing the advances that have been made in treatment of this beastie. Just let your sister guide you on your juorney. I know often, my husband just so allows this to overwhelm him. I want him to have peace & enjoyment during the time God allows us & sometimes he just gets so stressed that, I wish he could forget about it for a little while. I know firsthand how difficult it is for the caretaker as well since I nursed my Mom & Dad through it. Believe it or not (at least in my case) it is so much easier to be the one going through it than to be the caretaker.

May God bless you & know that my prayers are with you.

Melanie

[pamlee1]

Thanks everybody for the wonderful welcome and good wishes. It's nice to know I can "vent" to someone who's been there. How do I add a bio at the bottom of my page? Can't seem to locate that. Once I know how to do that I'll post all her information and progression so far. Thanks for being there.

[Don Wood]

Go to the top of the page and click on "Profile". When you get the screen, go down to "Signature" and there is a text box to the right that you type the info into. Then at the bottom, click on "Submit".

[Maryanne]

Welcome Pam,

You have come to the best site. As you can see the people here are so caring and so knowledgeable with the experiences they or their love ones have gone through.

Keep us updated on your sister.

We are here for you

Maryanne

[Katester]

Hi Pam,

Just wanted to welcome you as well.

I am sorry to hear about your sister. How fortunate she is to have you .

Although I can't answer your questions there are many here that can and will.

All of us will be there for you so come often.

Kate

[ellakc2]

Welcome Pam,

Your sister is lucky she has you. Good luck and take care.

[richinsdakota]

Welcome; I had not mets or lymph involvement at surgery....but Im only 7 mos. out, so havent had first screening xray, etc, yet. Hopin I stay clean, but never know a s u know.

I had terrible stomach from pain meds irritation, and other meds....see if u can get Nexium from doc., it really works! Expensive, depending on ur insurance...but is very effective. Good luck...Rich B.

[Lisa O]

Welcome,

It is great that you are so willing to support your sister. This type of situation happens to many people, however I do not have any personal experience. I just wanted to welcome you.

Lisa

[pamlee1]

Just needed to post an update on sister's battle.. As I mentioned before my sister's primary tumor has shrunk till it's almost not visible on ct scan and lymph involvement has reduced as a result of her initial chemo/radiation treatment. She's now into her second round of chemo every 3 weeks four treatments. Seems to be tolerating the chemo sort of ok...it's so hard to tell with all the side effects then meds to reduce the side effects. She's having so much pain from bone met in her thigh area we met with her Med. Oncol.& an Ortho. Surgeon last week. Decision was to wait a week and re-evaluate after seeing if pain meds made any difference. Right now the oxycoton is controlling the pain some but she spends most of her time in bed from being sick at stomach and sleepy from meds. Her doctor feels it's important to try to complete chemo but said if pain too bad may have to stop chemo and either consider radiation or surgery to stabalize the bone. Anyone had any experience with this. She just seems to be getting so much worse I'm getting concerned about surgery but think it may be the best for her. Guess I just don't want her to have surgery only to find out cancer is still progressing. Just seems like a lot more to pile on when she's already enduring so much. It just hurts so much to see her having to deal with this. I know the pain is pretty bad right now and dont' think it's too good to be doing the heavy pain meds for too long especially if you can't even get up and move around. She also seems to be more short of breath than she ever was...could this be as a result of the radiation? Last CT indicated some damage and mentioned radiation as a cause. It's just hard to believe someone feels pretty ok then gets this dx then it's all downhill during treatment. We have another visit with the dr's this coming Monday so guess we'll see what they recommend. Thanks for listening. Pam

[richinsdakota]

Sorry to hear of her discomfort problems....afraid I cant offer much on rad or chemo...altho I have heard rad can cause pneumonitis or lung damage. Question for the doc tho...also, my one chemo treatment, (taxotere) gave me pneumonia like infection...had to stop right there, take antibios and steroids for a week to clear it up. Was very short of breath when that hit ...

I am familiar with the stomach probs caused by heavy pain meds...my doc gave me Nexium which really worked. Ended stomach probs. If u can get that, should help. Good luck...Rich B.

[cindi o'h]

Hi again Pam.

Your sister's cancer and mine are very similar. Initially, you were asking about mets. My onc was explaining to me that even if ONE little itty bitty cell gets away that it can set up residence in some other area. Wow. And then that cell takes awhile to divide, divide, divide, until it finally shows up as a tumor. Her cancer to her hip may have been there already, but was just too small to detect at the time.

Her treatment plan is so very close to the one that I had. It is a very aggressive treatment plan. I had changes in my health from a day to day basis. Remember, that the chemo and radiation are continuing to work even this far out from recieving them. They are working at killing the cancer cells, but are also killing the fast growing cells and others in her body. She will get pooped out to say the least.

Her shortness of breath is a concern. It should be evalutated by her onc. I hope that she has a good pulmonologist. They can be invaluable. It took me a couple tries before I settled on the trustworthy one that I now have. I had radiation pneumonitis when I was not yet done with the adjuvant chemo also. It was treated with prednisone and I was hit with a couple of different antibiotics just in case. This needs to be checked out. My brother, Dick, died from pneumonitis or pneumonia just a couple of months after his treatment stopped. I wish I knew then what I know now. If that were the case, I think that he would still be here to harrass me. Shortness of breath is nothing to mess around with.

Glad that you are here and also helping your sister. Wonderful.

Hope this is of help but not alarming. Deep breaths and prayers and the two of you shall get through this arm in arm.

love, Cindi o'h