So many questions

[myrnalu]

Ok all,I need your input here.

My onc said no surgery now because of lymph node involvment.What Im not sure about is,No treatment right now because the tumor is same as last scans,no growth.Shrunk 50%after the first round of chemo and radiation.She feels more chemo now will just make me feel crappy.If I start having symptoms then more treatments?Shoulnt I be getting something now?The carbo,taxotere did nothing for the nodes.

Also having Quite a bit of pain in right shoulder blade.The side of the tumor.She says it could be a side effect from the tumor,Take tylenol.

Looking into a second opinion and clinical trials.Does the onc have to send me for trials?She didnt give me an answer about them.

Thanks for any input you can give me.

Marie

[marym]

I think if you have pain, it needs to be taken care of immediately. Tylenol is unacceptaple. Is this where there was radiation given? If it's been within a few weeks of the radiation, there shouldn't be pain.

As far as next up on chemo, I'm not sure. If I was stable, I would probably be okay with that, but I think a second opinion would still be valuable.

Good luck

Mary

[Kasey]

Well, Marie, you get a big vote for another opinion here. You don't need to be referred by your doc. Find a place, get all your reports and scans sent there, and see what they have to say. Not sure where you are being treated right now, but you are in NY, right? I think there's plenty of options for where to go.

Kasey

[kamataca]

Oh, not full of chemo advice here, but do not spend a minute in unnecessary pain! Why make your body fight against that, or deal with the stress of the pain? If the Tylenol isn't kicking the pain, make sure you will get something that is.

Keep asking all of your questions until you get the answers you need!

Kelly

[Don Wood]

I am not impressed with your onc. I agree with the others that you get a second opinion. Pain should always be looked at and controlled. Sorry the carbo/taxol didn't work for you. But there must be other routes. Don

[Ry]

Marie,

I think you need a new onc with more of a fighting spirit. You have options open that won't necessarily leave you feeling crappy- Tarceva for one. It's got its problems but it can work miracles when it works.

Good luck!

[cindi o'h]

Marie,

I am not convinced there is still cancer there. Nodes light up on PETs even after treatments end sometimes. Please get a COUPLE more independent opinions. See what other very good oncs say. Preferably ones that will put your scans on a view box or loaded in the computer and go over with them with you with lots of detailed information.

As far as the pain in your shoulder is concerned, I had a great deal of pain in mine too... I thought for sure it was from cancer. It was too much time on the computer.

XXX'ing all that everything will turn out really good for you, Marie. Get those phone calls made, okay?

Cindi o'h

[myrnalu]

Thank you Cindy,I needed to hear that.I am trying to find out where they take my insurance (aetna)to get a second opinion.Sloan doesnt take it and I also have to see if I can get medicaid as my ins will run out in Nov.

I was wondering the same about my shoulder being from computering.Its been bothering me some but worse these last few days.Stress related maybe?

[Connie B]

Marie,

Are you on SS disability by chance? If not, you might want to give that a try. You have nothing to lose by trying.

I agree with Don, Katie, Cindi, Kasey, you need a different Onc Doc. You need one that will fight the good fight WITH you. This is all about TEAM WORK!

Good luck and keep us posted.

[myrnalu]

Yes I get ss dis.Doesnt pay much.906.00 a month.Barely covers my rent.

[joanie55]

Hi Marie,

I really don't like what your onc said about your shoulder pain. First of all, Tylenol has been found to cause liver problems and you should be very careful with that. I recently had shoulder pain and was sent for an MRI. They were able to tell that there was no cancer, and it was blamed on arthritic changes.

I would start calling every large cancer center or hospital to see who takes Aetna. Someone must.

As far as Sloan, they are probably the toughest hospital as far as insurance goes. Maybe some of the other NY hospitals accept it. Many are excellent.

Best wishes,

Joan

[RandyW]

From the little helper on the other side of your computer. If your Onc will nort answer YOUR QUESTIONS about YOUR HEALTH. FIND ONE THAT WILL ANSWER QUESTIONS!!!!!!!!!!!!!!!!!!!! If they walk over you they will keep walking. DON"T LET THAT HAPPEN TO YOU.

I hate to see this happening right now. If something works why stop it?

Why no to clinical trials?

Too many unansqwered questions too me. If ya need me pm me you know where ot find me. Sending a prayer. Shoulder could be stress or computer use. Can you think about 30 minute massage once in a while or massaging unit possibly? Deb had heating pad and Wand massager.

[Chanwit]

Hello Marie,

I've had that feeling many times that my wife's Onc has lost interest or whatever goes on in their mind to make you feel alone in your treatment. Each time that has happen I always have a plan B. I do the research online and contact a larger integrated oncology team. She has a private Aetna PPO and coverage was seamless. More on that in a second. I've found that I know more about Clinical Trials than our onc and I understand why. Some treatment centers are involved with research and some are not. Also, a well grounded oncology center may consider some trials too risky. Trials are only for when the current line of treatment is failing. I guess trials are also a choice to be made if you don't have a means or insurance to pay for treatment. Some clinical trials still require some insurance coverage to cover scans and tests. Since your insurance runs out in Nov. is there a provision to continue coverage? Cancer treatment is very expensive. "Your money or Your Life" someone said. Go to www.clinicaltrials.gov and type in lung cancer, new york and pick a trial you like and read the qualifications and exclusions and contact them directly. I have done this as part of my Plan B and they get back with you quickly. I even found a trial in New York City that will test the use of Nutritional Suppliments with Taxol and Carboplatin. They admit that Nutritional Suppliments can kill more cancer cells along with certain chemo therapies.

My wife's use of suppliments have helped her feel better during treatment and I'm sure has killed more cancer cells because it's an everyday course without breaks and there's no half life. Anyway be proactive and do what makes you feel like you are working with a team that won't give up on you because I know You won't give up on You. Make wise choices.

Chuck C