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mpolacheck

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Hello everyone my name is Marty. I am new to this. I was diagnosed with Stage IV NSCLC adenocarcinoma in November 2011. I finished 6 session of chemotherapy reluctantly 3 weeks ago. I have decided to seek alternative treatment instead of maintenance Alimta. My oncologists argument, the Alimta maintenance routine "significantly" prolongs lives. But in fact they are only talking about a few months and I strive for more than that. Looking for support and new ideas. :?

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Good Morning Marty,

Sorry about the delay in responding to your post,it really is quiet around here,think, well for me here in Scotland , the sudden change in the weather last week from winter,now suddenly its summer ,so its out and about soaking up all that warm sunshine.

I really am sorry to read about your dx,first off, expirery dates,my GP gave me two years max,nearly 4 years ago,I also have a friend who was dxd with SCLC in 1993,given 2 months to live by his doc,he went on to make a full recovery,then in 2007,he is dxd with NSCLC,again makes a full recovery,today at 72,he is so full of the joys of life and has the energy of people half his age.

I can only reflect on my experience of treatments,which consisted of 4 cycles of neo adjuvant chemo,to try to reduce the size of the tumour in my upper right lung,to make it managable for surgery,otherwise I would have radiotherapy instead,well the chemo worked and in Jan 2009 I had a upper right lobectomy,since then I have received no further treatment.

Altima is not a drug I am familar with?you quote only it extending life for such a short time,to make it unattractive for you,by taking it.Are you aware of www.cancergrace.org?this site is manned by a team of oncologists who will answer any question you have about lung cancer,I can recommend you pay them a visit,the service is free and you well receive a prompt reply to any question put.

Alternative therapies,special diets,special drugs to take,it makes your head spin trying to separate the wheat from the chaff,so many quacks out there trying to exploit vulnerable peoples illness to make a few fast bucks.I do believe keeping to a sensible diet,plenty of fruit and veggies,less red meat,more oily fish,cut down on the alcohol.I have read about the benefits of taking supplementry vitamin D,particularly since Scots dont get enough sunshine throughout the year,I think this is also true for some areas in the USA and Canada.Another bit of highly publicised bit of research to come out recently from Oxford University is the benefits of taking daily 75mgs of aspirin,apparently,this has the ability to prevent cancer cells hitching a ride on blood cells to travel to other organs of the body,seems the longer you take aspirin the more effective it becomes in preventing cancer spread?.

Sorry to have rambled on a bit,anyway its a pleasure to meet you,and I hope I can get to know you better through posting in here,can I recommend the forum Just for Fun,this is about the buddies here sharing the lighter side of their daily lives,well we dont really want to give cancer too much room in our lives.Bye for now.

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Welcome. Sorry you have to be here but it's a good place to meet others who have walked in your shoes. I can't help with alternative treatments because I haven't gone there yet. I will tell you I had a good run on Alimta--a full year before progression and then on to another good run on Taxotere. I'm about to start Gemzar. In balance, I've managed to extend my life with advanced stage LC 4 yrs, 5 mos. Good luck with whatever course you choose and do keep us posted.

Judy in KW

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Marty, I am sorry you had to find us, but I am so glad you did!

I am wondering what happened after the chemotherapy? was there a change? Stability? New growth? Why are you thinking the Alimta will only give you a few good months? Have you considered a second opinion, if for nothing else than your piece of mind that you explored all options?

You can read my story under the "My Story" forum. But in a nutshell, my first oncologist planned on doing the traditional chemotherapy with me and even with that gave me less than a year to live. I dropped him, got a different doctor and treatment plan, and here I am living a pretty full life over 5 years later.

I can't help you with any questios about alternative therapys, but try asking a few questions in the "Path Less Traveled Forum". Maybe someone there can help. Also, think about Erics suggestion to ask questions of the doctors over at Cancer Grace.

I hope you continue to come here and ask questions. Some people are here every day, others only check in once and a while, so you might not always get a response immediately, but you will get one! This is a great group of people!

Please keep us posted on what you decide to do, and how it is going. We all learn from each other here.

peace

Janet

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I want to assure everyone that my condition is stable! :)

I am a 52 year old women that had been in perfect health prior to this diagnosis. I was diagnosed November 8th, 2012 with NSCLC Adenocarinoma Stage IV in right lung. I had pericardial fluid drained during my one week stay in the hospital. I had numerous tests, CT scans, MRI's, biopseys and had my port put in. The week after I left the hospital, I went in for a PET scan. The results of the PET showed affected Lymph nodes as well but no other signs of cancer. Radiation and Surgery was out so I had not other choice. I started chemo November 18th with Cysplatin and Alimta. After my second round of chemo I had another CT scan and showed 25% shrinkage of tumor. The chemo made me very sick and just when I would start to feel better, I would have to go in again for another round and I would start feeling bad again. I went to chemo every 3 weeks for a total of 6.

After my 4th round I wanted to quit and I almost did but continued. In February I went to MD Anderson to get a second opinion but they were not recommending anything further since the treatment I was doing was working. I've been in good health since I was diagnosed other than the LC. My blood work has stayed great. My hair thinned out but I still have hair. I feel really good since I've been off the chemo. Instead of the maintenance Alimta which my oncologist was recommending indefinetly, I decided to go the alternative method. If I were to progress, I would certainly consider another round. I am praying and hoping that there is no more progression of the cancer and I can continue on with a better quality of life than what I had while being on chemo. I think I have many good years of life ahead of me. I could use any advice. Thanks for all the replies I have gotten so far. Marty

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Marty - welcome. I have to admit if given the choice, and not too many negative side effects, I would go with the Alimta. There are some trials going on for immunotherapy drugs/vaccines. Most of these have no or few side effects, and some are showing promise. I did the Lucanix trial, but only because my doctors were not recommending any other treatment. That trial is still enrolling patients, but you have to enroll within 4 months of your last chemo and - maybe the biggest consideration -- it is a double blind study so you could get the vaccine or you could get a placebo. There are also a couple of other trials that are similar. If you are considering alternative therapies - such as acupuncture, diet etc., you could probably do those as well. If you haven't already done so, you should check out cancergrace.org.

Best of luck with whatever route you take.

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  • 1 month later...

HI Marty,

The path you take in your lung cancer journey is your own. We are here to support and walk along side of you.

I hope you continue to post- the path less travelled is a great forum to post in as well. So many people read these postings and you never know who you will help by sharing your stories and experiences.

I hope you continue to feel well and always remain stable.

Keep posting! I look forward to getting to know you.

Hugs

K

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