z

Thanks everyone. I only managed to have one dose and then my counts were too low to get the second one. In the meantime, swelling was discovered in my supraclavicular lymph nodes... Now, I am again having radiation with carbo/alimpta chemo. Z

Thanks Don and Cindi. I just posted a question on the cyber knife list. Z

Hi Friends, It has been a while since I wrote - it has been a crazy time, and I always get sort of overwhelmed with everything there is to do. Last I had a round of adjuvant chemo - Gemzar. Took one round, and then my counts were always too low to get the next round. During this time, someone at my lung cancer support group noticed that the lymph node on my neck (right above the collar bone) seemed swollen. 2 days later I pointed that out to the oncologist, he called in the pathology team, they did a needle biopsy right there on the spot, and what do you know - squamous cell all over again. I was hoping that the radiation, chemo and surgery would have put an end to this struggle, but no... I am rather devastated, of course, but plugging along. Have had 2 opinions so far. Both want to do radiation with chemo, and then more chemo. One suggests 60 Gy over 6 weeks, another 50 GY over 5 weeks and then a week of cyber knife directed to the obviously affected lymph nodes. They want to do chemo concurrently. My current oncologist wants to do weekly carboplatin/taxol again, cause it seemed to have worked well with radiation last time. Then more chemo after radiation... The other team wants to do cisplating/etoposide, or alimpta... Her hesitation makes me a bit nervous - I would like to see a reasonable argument for why one and not the other. That is my current situation. Has anyone dealt with something similar - with the supraclavicular nodes? And has anyone had etoposide, or alimpta, and what have been your experiences? Thanks, Z

You both heard each other, and that is a wonderful gift.

Thanks everyone for your input. For an update... I have been recovering from surgery, slowly but surely. There was a decision to make about adjuvant chemo, and I hesitated for a while - felt overwhelmed by the surgery "after effects" and such. Finally, decided to go for a couple of rounds of carboplatin/gemcitabine - started last Wednesday. I have been trying to work full time through all this, and manage life on my own, so it has been kind of crazy. Now, I was told I can expect some hair thining on gemcitabine, but no real hair loss of any substance. 50% sounds substantial - did anyone else have that experience? My best wishes to all, Z

HI Folks, Has anyone had a carboplatin/gemzan (gemcitabine) combo? Any feedback? Z

I take some of the same you do, plus Omega 3, some Mannatech products, Laetrile (B17-apricots pitts), graviola, paw paw, and other herbs, intravenous vitamin cocktails... I also work with a Chinese medicine doctor and take an herbal formula she makes plus wild American Ginseng... I took accupuncture while on radiation and chemo, but stopped that to reduce my expense a bit. All of these things add up in costs, but... Whatever it takes to end this nightmare...

I spent Christmas in the hospital, but got home for New Year's. I am now recovering at home. Have a problem with a persitant cough (whenever I breathe in a bit deeper) and feel tired and sleepy a lot. Doctors keep saying it will go away, but I am not so sure all is well there. Pathology of the removed lung tissues showed all negative - it all got killed by radiation and chemo, whatever was there before. (Now I am thinking it was all a mistake - there was never cancer there really:)

besides the nausea medicines, I did accupuncture and took chinese herbs. Z

Yes, I am going for the surgery cause everyone is saying that is the best chance for cure... even though I have a hard time seeing cutting parts of my biody as healing. But, moving ahead and doing whatever I have to do to fight the demon... I believe that does not apply to organizations with less than 50 employees in country, which mine is I think. Also, I just started this job in June and do nto have much leave collected, so it will all have to be unpaid leave... and not much savings here:( Z

Well, I should be going for surgery on Monday, 6AM EST. Thanks for your support. Z

Great News! I wish I could go to Florida - it is cold here... brrrr...

My thoughts are with you Leslie. Z

My thoughts are with you Leslie. Z

Thank you all for the support. I will keep you posted. Best wishes, Z

Well, Mediastinoscopy showed all lymph nodes tested clear, except for one. So surgery is still possible, but not as strong a recommendation as if all lymph nodes are clear. So, I have to decide... to be or not to be? Z

Hi Folks, It has been a while since I posted here... I have been distracted with therapy, depression and anxiety... but here is an update: I went through radiation (7 weeks) and concurrent chemo (6 weeks weekly). I handled that pretty well - worked through it somehow. This week The Ct/PET scans showed that the tumor has shrunk from 4cm to 1.7 cm diameter and the lymph nodes seem clear. Next is mediastanoscopy on Monday. If lymph nodes are clear, they want to go for surgery. May take only my middle lobe out, may take both out - not sure till they go in. Then comes more chemo. This is the protocol I am in. http://www.rtog.org/members/protocols/0 ... .html#0229 I am terrified of the surgery and chemo and everything. This last month has been hell. It dawned on me that I will not be able to work (I do not think my job will allow that) and will run out of money. Family and friends are supportive, but I am still terrified. How do you all manage financially? I am curious to learn more about the surgery - what to expect and plan for. How does it all feel? Can you please share some of your experience? Especially if you have had surgery after radiation Thanks, Z

That is wonderful to hear, Mary Ann. Is it rude, or silly, to ask - how was it, and how are you feeling now? I fear the whole process... Already had 2 surgeries with my cervical cancer 7 years ago, and still feel the effects... even though, life has been relatively good until now. Thanks, Z

Darci, I believe it depends on where that lymph node is located. If it is just on the right side, than they would go ahead with surgery. If it is in the middle of the trachea, (carinal, like in my case), then they cannot operate right away. My lymph nodes got biopsied with a bronchoscopy with needle aspiration (needle on the end of the bronchoscope) instead of mediastanoscopy (spelling?) Z

Darci, I believe it depends on where that lymph node is located. If it is just on the right side, than they would go ahead with surgery. If it is in the middle of the trachea, (carinal, like in my case), then they cannot operate right away. My lymph nodes got biopsied with a bronchoscopy with needle aspiration (needle on the end of the bronchoscope) instead of mediastanoscopy (spelling?) Z

Plans for surgery are a part of his study... so when they will be administering radiation and chemo, concurrently, they will be planning for surgery in the future. They plan to go down the mediastanum (?) before the surgery, and after adiation. and remove all lymph nodes and biopsy them. If they are all negative, surgery is an option. If any of them come out positive, no surgery, but just follow up chemo. It sounds violent and difficult to me, but that is it - supposedly the most aggressive therapy one can get, and maybe survive:) Supposedly chances for long term survival are better. They did some local study at UMMC - here is a link: http://ats.ctsnetjournals.org/cgi/conte ... code=annts Z

That is wonderful, I am glad it all worked out well for you. I think the issue with mine is that the carinal lymphnodes are affected, which makes surgery more complicated. Basically, the first opinion was to do just radiation and chemo, saying that curgery is not possible in my case. The second (John's Hopkins) wants to move on to full blown chemo, then surgery. Lombardi Center (Georgetown Univ., Washington, DC) proposes 40 g. of rediation with chemo, then surgery. University of MD proposes I join this study, with full blown readiation with chemo, then surgery, then chemo... Here is the link for 0229 Phase II Lung (Activation: 9/30/04) - http://rtog.org/members/active.html#lung Regards, Z

Hi, I have so far gotten three different opinions from 3 different cancer centers on how to treat my particular cancer. One is proposing radiation/chemo, then surgery, then chemo. So, I would like to ask - has any of you undergone such a treatment - surgery after radiation/chemo. If so, what were the circumstances and what was the experience? Regards, Z

Thanks Connie:) Z

I will contact a cervical cancer group too, thanks. Here I am interested in the experience of people who had cervical cancer before lung cancer - I am not sure what is not clear. I am interested in the therapies employed, and their effects. If you look at one of the reports that were posted above, it states that people with cervical cancer are more likely to develop lung cancer. So, the two do seem linked in some way, even though pathology may not be able to clearly say whether they are one and the same or not. Regards, Z