Finally have the courage to speak

[SSF]

Hello,

I am so impressed by the compassion, partnership and knowledge that you all possess. I have been looking at this site since my husband was diagnosed in August with NSCLC, and it has been a blessing. This is the first time I have ever "spoken". Tim was diagnosed (finally, after going through "acid reflux" aignosis, sinus diagnosis) with NSCLC/adnocarcenoma stage I/II. After they operated he was restaged to 4, based on "BB" size tumours throughout the chest lining on the same lung. Pet scan/MRI showed no other spots. After seeing 4 different oncologist his treatment was carboplatinm/taxol. We tried to get avastin added early, but he was coughing up blood, so oncologist was not comfortable giving that. After 6 sessions, 2 cat scans w/no change, and the coughing up blood gone, he started on avastin + chemo for 2 sessions. SAW SHRINKAGE, so he's getting 2 more sessions then onto avastin/tarceva. Besides saying hello finally, and wanting to thank you all for your support even though you didn't know you were giving it, I wondered if anyone has had shrinkage of a tumour then gone back into have the primary tumour removed, or radiation on it. I have asked repeatedly if we can do radiation in addition and have been told no. I don't understand - can anyone help, or help me phrase the questions to the oncologist differently?

Also, we are moving to Northern Idaho. Does anyone have an oncologist they think highly of in either Cort d'Alene or Spokane?

Thank you to all!!! and God Bless you all!

Sandra

[hollyanne]

Hi Sandra -

I can't help you with either question...but welcome. I am sorry that you had to find us, but I assure you now that you have spoken up you will get tons of support and love. As you know, the journey is full of ups and downs...I am sure the last six months have shown you that.

I am unsure as to why they can not radiate, unless they think the side effects would be greater than the payoff (since he is having good response with the chemo) -- yet someone on the board will have an educated answer. You will start getting lots of answers/input pretty quickly.

Welcome. We are here for you!

Holly

[Nancy B]

Hi Sandra, welcome. I don't have any answers for you but just want you to know that there are many caring people here, and someone will have the answers you are looking for.

Hugs,

Nancy B

[Fay A.]

Welcome. No personal experience with the facility, but in Spokane there is an Oncology Medical group that is affiliated with the Mary Crowley Research Medical Center that helps with this site's Ask The Experts forum. Last year it looked like my husband might be transferred to Spokane, so I checked into what was available in the area.

[Donna G]

Welcome. I don't know your whole circumstance but I just wanted to say I had chemo and radiation together to shrink a tumor before I had surgery.

You said "after they operated", was that an open biopsy or did they just quit surgery when they found more than they expected?

Again great you showed yourself, now keep us posted. Donna G

[Don M]

Welcome; it sounds like your husband is off to a good start with some promising drugs. I don't know why radiation can't be added to the mix, others have done it, but if chemo is being effective maybe the problems that can come along with radiation are not worth it. If you are not satisfied with the answer the oncologist is giving you, ask him to expalin it again. I would.

Don M

[Ry]

Welcome Sandra,

I would think radiation would be possible, if you've been reading here you know it is usually done along with chemo. Where are you living now? I think you should seek a second opinion on that. Most people get excellent results with radiation.

For my husband we were told that he would start chemo and radiation then if the tumor had shrunk enough he would be evaluated for surgery. Others on this site have had tumors removed following shrinkage--so the answer to your question is yes it is possible. However, make sure he does not get the maximum dose of radiation to the area or surgery will not be possible.

I am glad you spoke up. Good luck on your move--I lived in Moscow, Idaho for awhile when I attended the University of Idaho.

[Judy369]

Hi I don't know how old your husband is but giving Chemo and radation at the same time has a lot worse side effects.Ask if you can do radation after chemo or ask about Gamma Knife.I don't know your husbands history so I can't give you much information.Drill your Dr and get all medical records including test and Dr.'s notes.I look up everything I don't understand on the web and I use medical dic.for words I don't understand.Judy369

[Frank Lamb]

Sandra,welcome to our support family.Sorry you and Tim need to be here tho.I have had chemo and radiation together several times but I had to wait a while after surgery to do so.Radiation does a number on the cancer but it also does a number on everything else in its path.

There was a post on here not too long ago by luv my dog2 (Bruce)that had a site for drs.in many different areas.

[J.C.]

Welcome Sandra,

I don't have answers to your questions

but know you will find many people in this

group that will know about the radiation.

I find that many places have a protocol to follow

in their treatments instead of going by the individual patient.

You have already some answers to your questions

and more will be coming.

Hugs

Jackie

[Don Wood]

Hi, Sandra, and welcome. Glad you finally posted. My wife had Carboplatin/Taxotere as her first chemo and it worked well for her. After three chemo regimens and many radiation treatments, she is a 3-year survivor of Stage IV, NSCLC. She will begin Alimta next week. She was also offered carboplatin/taxol, with Avastin, as an alternative, and that is what we will go with if Alimta does not work. On radiation, an area can only be radiated once, so the onc may be holding off on it for a more critical time. Good luck. Don

[Miami Janet]

Welcome to you and your husband...Janet

[trishnmiller]

Dear Sandra, You can read my husband's profile but he is also a stage IV. He had his best chemo response to Alimta. His brain tumors (13), liver (1) were removed by stereotactic radiation, (Gamma Knife, cyberknife,) Now he is having IMRT on the original tumor which will be followed in a few weeks with cyberknife. This is not standard protocol and it was an exhausting battle with doctors and insurance but it worked, continues to work as we pray and keep our fingers crossed. PM me if I can help in any way.

Trish

[dchurchi]

Sandra,

I am unable to answer your questions as my husband has small cell lung cancer, but I want to welcome you to the family. I am sorry you need us, but glad you finally started to post. As you have already witnessed you will not find a better group of loving people. I will say prayers for you and your husband.

[cindi o'h]

Hi Sandra,

I have a friend in Helena, Mt. who uses Dr. Wiener or Weiner... (sounds almost like whiner)

for her oncologist and her sister's onc. She likes him. Spokane isn't all that far away, so he may know of a reputable onc. in your new area that he could refer.

Regarding your question:

If I understand your husband's diagnosis and staging correctly, it sounds as if before surgery they thought it was a small tumor in one lobe without any lymph nodes involved or distant metastases, right? But, then, during the surgery, the surgeon uncovered multiple "malignant nodules" througout the lining of his chest? Does this mean outside the lung? If it does, then he would jump to a stage IV, and would not be eligible for radiation, since the cancer most most most likely has spread not only to those nodes, but micrometastisized to other areas to start new nests.

If there are multiple areas in the chest, that would also ruin! (and I am not kidding) all of the tissue in its path and around it by radiation. My lung is fried...deep fried and has no real life in it where it was radiated. The risks would outweigh the benefits, it sounds like to me. Especially, if it is a large field. ( they radiated my mediastinal lymph nodes and the two tumors in the R/U lobe.) along with chemo and that pretty much did me in. That was aggessive therapy.

If you mean that the bb size tumors are in the lining of the lung (the pleura) that would also contraindicate radiaion from there as there is a lot of seeding that happens in that space. At least this is my understanding. The pleural space cannot be radiated either.

I don't know if this makes any sense to you. This is what my brain can come up with, though.

Could you dig up the surgeon's report or the path. report and post that to us? Maybe that would help us to try to help you some more.

Another thing you might want to do, it to study the charts on staging and treatment of NSCLC. Some of the charts give better explanations along with them than others. Some are easier to understand than others too.

Welcome out of the shadows! Glad you got your courage up.

Cindi o'h

[dadstimeon]

Welcome Sandra.

Rich

[bauner95]

Sandra,

My husband had his first surgery attempt 2/2005, but there was too much cancer. He did 8 rounds of chemo and had shrinkage. His oncologist at the James Center referred him to a new surgeon. On Nov. 11, 2005 he had surgery and all of his cancer was removed. He was considered cancer free after surgery. So the answer is yes, surgery can be done after chemo, but it depends on the doctors and the tumor position and your husband.

I am no help for a new doctor. We get treatment in Columbus.

I will be praying for you both.

Kim