introduction

[dfourer]

Hi. I'm 53 years old, and living with stage 4 lung cancer 4+ years now. Interested to hear from anyone with any similarities, to share experience and insight about treatments. I studied biology of cancer a lot during my first year of illness. I read latest published literature every few months. I'm also HIV+ for over 20 years. I've learned that knowledge makes a difference, though I don't know why I've lived so long. Living in Chicago, IL, gay, single most of my life, living with gay friends.

[Larry's Wife]

Hi, dfourer. My husband's journey is with sclc, so his treatment plan has been different than yours, but I wanted to welcome you to the site. I have found the people here to be very knowledgeable and supportive. The site has been down for much of the day, but I expect you will be receiving responses as soon as folks realize that we are up and running again.

Lynn

[recce101]

Hi, welcome to the group, and thanks for the detailed profile. It's great to see the impressive results you've had with Alimta, not only on your account, but also for those of us who may be getting that drug somewhere down the road.

I do have a question about this item in your profile:

--November 2007 after about 40 cycles of Alimta, CT shows clear progression of dissease. I'm feeling fine. Begin combo Alimta and Avastin (7.5 mg/kg Avastin at my request). next CT is return to baseline.

Are you saying that after adding Avastin, your next CT scan DID show a return to baseline, i.e., improvement back to where it was before the November 2007 clear progression? If so, I think that's remarkable. Also, was there a particular reason you asked for the 7.5mg/kg rather than the more standard 15? I've heard that one trial showed the two dosages to have similar effectiveness, but 15mg/kg is standard for lung cancer because that's the way the primary trial that got Avastin approved for lung cancer was structured. If I got that wrong, please don't hesitate to correct me.

Best wishes and Aloha,

Ned

[Don M]

Hi dfourer. I have had cancer for over 4 years now and I suppose I am stage 4 because it crossed to my remaining right lung. I have never had any distant mets . My treatment history is different than yours.

Welcome to lchelp.

Don M

[Muriel]

Hi dfourer,

Welcome to the site. You are one lucky guy! You certainly are doing something very right. Whatever it is, don't stop now. Seriously, I'm glad you found us and joined us. We have lots of stage 4 NSCLC members and some have been very successful in keeping it in control.

Muriel

[RandyW]

I am pleased to make your acquiantance under the circumstances. Sorry you ahve to find us but glad that you did. This is a great place for support and knowledge and compassion also. We have quite a few stagfe 4 that are doing well. If i can help in ay way let me know by pm or just a note somewhere. I will find it if Ya post it.

[dfourer]

"recce101"]Hi, welcome to the group, and thanks for the detailed profile. It's great to see the impressive results you've had with Alimta, not only on your account, but also for those of us who may be getting that drug somewhere down the road.

I do have a question about this item in your profile:

--November 2007 after about 40 cycles of Alimta, CT shows clear progression of dissease. I'm feeling fine. Begin combo Alimta and Avastin (7.5 mg/kg Avastin at my request). next CT is return to baseline.

I read the radiology reports. Primary tumor had grown to 3cm, lymph glands swollen, and trace of pleural effusion--all bad signs. After two cycles of Alimta/Avastin primary tumor back to 2.5cm, lymph glands reduced in size, and pleural effusion not detected. That's what I remember, but it was 6 months ago. I was not feeling ill and was taking it calmly.

About the dose. I read reports on the two large studies.

--ECOG 4599 Phase III, Paclitaxia/Carboplatin in the United States (15mg/kg)

--BO17704 AVAiL Avastin/Cisplatin/Gemcitobine study in Europe with (15mg/kg and 7.5mg/kg).

I've been concerned about the drug burden on my system over as long a time as I've been getting chemo and other treatments. And I considered the possibility of missed treatments due to failure to tolerate drugs. And I was feeling well and didn't want to suffer. When I read that the lower dose got equal results in the 2nd study, with slightly lower side effects, I thought real seriously about starting on the lower dose. There was really no long-term data as all the enrolled patients are grouped together. Also there has been criticism in the press that Genentech and other companies want to avoid testing lower doses after the price of the drug is set (do a New York Times search). I'm not suggesting anyone copy my behavior.

As far as I know, details of the AVAiL Bevacizumab(Avastin)/ Cisplatin/Gemcitobine study were never published. I assume it continued to collect long term date and secondary end points, but nothing published. Should I write to the authors and ask? It's been a year since the brief report at ASCO 2007 annual meeting.

Here in Chicago (Northwestern Medical Center) there is a study of Avastin/Alimta going on. I've heard nothing from it. My doctor (Joyti Patel) says the combination has been hard for patients to tolerate and the dose is often lowered after starting treatment.

I'm tired and my muscles ache on this regimen, but I carry on, pushing myself in atheletic activities. Towards the end of each cycle I feel better. I have a CT scan in 10 days.

More comments welcome.

[dfourer]

Now that I've written all the scientific stuff, I want to say thank you all for welcoming me to this site. On a good day I may be absorbed in my normal life, but I'm human. For the knowledge and for someone to lean on, this is a great place.

By the way, the nurses at Robert H. Laurie Cancer Center (Northwestern Medical Center/Chicago) are wonderful. I always know they will be there for me in many ways when I need them. I fear less because they are there.

I posted under the "buddy" topic because having a buddy in Chicago makes sense. I have felt a little isolated with all this. I learned that it's usually not a good idea to share about my illness with people I know. Even if I do, what can they say?

with love,

David

[Bruce u]

Hi dfourer

You have certainly been doing something right. Congratulations on being a survivor!!! You have joined a great group of people where the member' s are great and very knowledgeable.

[Ry]

David-

Welcome to our board. I am glad you found us. I know we have members in your area and LUNGevity is based in Chicago so I am sure there are buddies to be found close by. As Muriel says, you're doing something right-- keep it up.

Rochelle

[Barb73]

David,

So glad you found us - though, as they say, not for the reason.

Your observation about knowledge is one that I have found to be true.

Although you may not know why the four years, you must be doing something right, so keep that going.

Sending my very best to you,

Barbara

[Flyman35]

Hi David. Welcome to the group.

Denise

[SandraL]

Welcome and glad you found us. You will find lots of supportive people and good information here. And I bet you have lots of info to share as well. I love Chicago...one of my most favorite American cities!

Continued best wishes

Sandra

[recce101]

About the dose. I read reports on the two large studies.

--ECOG 4599 Phase III, Paclitaxia/Carboplatin in the United States (15mg/kg)

--BO17704 AVAiL Avastin/Cisplatin/Gemcitobine study in Europe with (15mg/kg and 7.5mg/kg).

Thanks for the memory refresher -- that's about the way I remembered it. And aside from the dosage, another difference in the two studies was the drug combination. That explains why it's more common to see Avastin teamed up with Taxol and Carboplatin in the U.S. than in Europe. Dr. West (cancergrace.org, formerly onctalk.com) just returned from ASCO 2008, and he's been posting articles on what was covered there, but I didn't see anything new on the AVAIL trial. He did post something on AVAIL in April...

http://cancergrace.org/lung/2008/04/21/ ... -negative/

...which says there was no increase in OVERALL survival with either dose, but the significance of that varies depending on who is asked. Actually, I think you had good reason to request the 7.5mg/kg dose. If you're not already familiar with cancergrace.org, may I suggest that you add it to your browsing list. Many of us have "dual citizenship" there and here, and have the same usernames both places.

Aloha,

Ned

[shellit74]

Welcome David! Glad you found us! Good place to come and share stories and is a wealth of information!

Shelli

[Patti B]

Hi David-

Welcome to the forum. As other have said, sorry you find the need to be here but hope you will find this site to be the godsend I have found it to be.

I will be getting my 14th cycle of Alimta tomorrow - prior to that I was on Avasting alone for about 7 months. Alimta, as I am sure you know, can cause fatigue and SOB. BUT --- scans keep coming back good (knock on wood)!!

4 years at Stage 4 is absolutely wonderful!!! I am at almost 2 and have set a goal to see my son graduate from high school in 2011!!!! When I read inspiring profiles like yours, I just think it may happen.

Continued success in all you do -

Hugs - Patti B.

[LovesLife]

David - welcome. It is so wonderful that you have had no bone pain for 7 months. You sound very determined and positive - it is definitely working for you!

I wish you good luck on your CT scan in 10 days.

Take care,

Linda

[paul verdon]

Hi David

I read your message and felt encouraged for my partner of 25 years (see his history below). Your sitution is very similar to Michaels becasue of the location of the cancer, and Michael is also on Alimta, Vastin and Zometia.He is responding well to this treatment and hasn't had much in side effects except a little tired. He did however have to start radiation last week for 10 treatments to his pelvic area. It's been one year for him and your back ground gives us much hope for many more years to come. Thanks for posting to this site.

Paul

[dfourer]

"paul verdon"]Hi David

I read your message and felt encouraged for my partner of 25 years (see his history below). Your sitution is very similar to Michaels

I used to live in Long Beach. One thing I did not have is a partner, and I was lonely. Only briefly in my life did I live with another man, and then we were 40 years old. All of us lived through the AIDS epidemic. I tested positive in 1985. having gotten through that, I thought surviving cancer was a bit much to wish for.

I agree that my medical situation is similar to Michael's. Both had our first symptoms in bone. Both did not respond to EGFR type drugs (Tarceva/Iressa or Erlotinib/Gefitinib). Both responded to Alimta and Zometa+Alimta. It's possible that what works for one of us in the future will be predictive for the other. Same if one of us finds that something does not work. I will let you know if I try a new treatment.

Avastin was a breeze. That's why I could take it for several years with few interruptions. The combination of Avastin and Alimta is harder to take than either alone, I'm told. After feeling healthy for a few years, I'm not happy about feeling less energetic and the prospect of continuing on this. Actually I'm tired for two or three weeks out of a 4 week cycle. Was supposed to be three week cycle and I cut back after I got a good response.

Avastin effects my muscles. I like to exercise and I work with my hands (and my back, so to speak). My muscles ache, usually the next day after working. My blood pressure went up from only 100/60 to 130/90 or worse. That sort of upset me. It's come down, especially at the end of a cycle.

I realize I've had a good ride, the last few years, and can't count on the future. I could be taking some awful medicine two weeks from today. On the other hand, I don't much think about it. I discovered that getting on with my life is not denial. I want to stay busy. One thing on my mind is to take a vacation and go backpacking or camping or canoeing or some out-in-the-country kind of thing. I will go when I find a suitable companion or group or tour to share it with.

I had hip trouble and I limped, but it resolved when the cancer treatments worked. Much later, the cancer in my spine effected a nerve in my arm, but it has not been serious and it improved some. A couple of times I had really severe bone pain which just went away after another treatment. For a long time I could predict what the tests would show by how my bones felt. Last fall I had the opposite experience. I felt just fine when my Chest CT showed tumor groth, new fluid, and swollen glands. That's when I started Avastin, which reversed those developments. I never had a PET scan, only Chest CT's. I've had Bone Scans, which show places better and some worse.

The most notable thing about all my experience was when I started Alimta in January 2005. I was taking Vicodin for bone pain in my neck, shoulder, hip, and leggs, every 4 hours, night and day. About 10 days into the new treatment, I woke up and had no pain at all. I didn't take another pill all day or all week. I sort of knew that this was a home run. It's also notable that the cancer has not spread to new locations since my diagnosis. That's my understanding.

I wish you both good luck and good health. I hope we can stay in touch through ups and downs.

David Fourer

Chicago, IL

[Wendy]

Welcome David!

I was initially staged IIIa 4 1/2 yrs ago Adenocarcinoma. Fast forward..... 2 1/2 yrs ago I had 2 bone mets and was pushed to stage iv.

Your history is very interesting. I participated in the Iressa maintenance trial back in 2005 and it is interesting to see how other people faired after being treated with Iressa.

I am currently on Tarceva and Avastin together. I started on the 2 drugs January of 2005 and remained on both (along with Zometa) for 1 year. My cancer had disappeared on this treatment regimen within 6 weeks of starting it. After the 1st year, we stopped the Avastin & Zometa and I remained on Tarceva daily.

This January I had a new met on my spine and we added the Avastin back in and I have had a good response with this treatment again.

It is pretty amazing how each of responds differently to the drug combos. I thank you for posting your experiences and giving some of us newer diagnosed stage iv's hope!!

I hope you continue with many more years of survivorship!!

Wendy - 4.5 yr survivor adeno

[CaroleHammett]

Welcome, David, and congratulations on your survival rate success!

You're so right about this being a "safe" site to discuss subjects and feelings that are much more difficult to cover with family members and friends. The participants here, whether patients/survivors or family members/caregivers are supportive beyond belief (don't know what I'd do without 'em!).

Carole

Life is not measured by the number of breaths we take, but by the moments that take our breath away.--the late, great George Carlin

[dfourer]

Wendy,

Here's my take on it. The various responses of tumors seem to result from the random genetic mutations in cancer. We can't yet get a genetic or molecular "signature" of a cancer, to predict which drugs will work. We just try each drug.

I've been kind of a one-hit-wonder. I got a really really good response to one type of treatment (Alimta). I got no response from Iressa, so I probably won't get any benefit from Tarceva either, since they work in much the same way. Avastin usually enhances the effect of another drug, in my case Alimta again, so I'm still really getting by on Alimta. I got some benefit form Carboplatin/Gemcitobine, so those type of drugs remain a future option, boosted by Avastin perhaps.

I'm starting another thread on reading and books about cancer.

http://www.lungevity.org/l_community/vi ... p?p=363586

Thanks again for all your support.

David

[paul verdon]

David

You have really had a ride on the health journey. We felt so lucky not to have been diagnosed with HIV. We did have a scare with an x of mine who passed away in 84 a year after Michael and I meet. We thought how lucky we survived HIV, and then in our wonderful life together Michael gets lung cancer. It's been hard on me probably in some ways more than Michael.

Michaels bones ache more than anything else but he only takes Aleve twice a day for the pain. When he gets his chemo treatments he feels aching all over but then it goes away or lessens. The Zometia according to the ONC causes the pain while it is working. He's feeling much better already from the radiation. My concern was the doctor said it usually works for a year which once again upset me. I have learned from this site however it can work for much longer and every one is different.

Michael continues to work from project to project this last year. He is a film sound editor and works independently so when needed he stays at home. We do live for today and plan ahead for trips etc. We have wonderful friends and family and get a lot of support.

Thanks for responding and lets keep in touch.

Paul