Finally got that PET scan

Although this isn't actually a recurrence, we now know where my cancer went when it left my lymph nodes. The PET scan reveals that I have multiple lesions in both lungs. I didn't even get a chance to do the radiation since the metastatic lung cancer was located the day before I was to have my markings done. :^(

Both my radiation onc and my usual onc have agreed that I am now definitely stage 4, and that my cancer is incurable. My onc tells me that the average life span for someone who has what I have is 1-2 years, no more than 5. Since the TC cocktail didn't touch the lung cancer, which was there at the git-go without our knowledge, they don't plan to do further chemo either. He plans to put me on Herceptin next Tuesday, and hopes to measure the progress, if any, by chest xray. I've seen the first chest xray, and I can see at least 5 or 6 tumors in my lungs.

Has anyone had any experience with herceptin? What are the side effects, and how effective is it supposed to be on HER- (borderline)

By dj64
Posted November 7, 2009 at 7:11 pm
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Dear Mrsmas,

Don't believe the stats. I was dx in 2008 with widespread pulmonary and pleural metastasis. I had a VAT biopsy and the surgeon stated that my lungs and pleura were studded with tumors. I am ER+ and began Faslodex. I progressed and am now on Femara. Eighteen months after the horrible ct and PET scan, I am now stable. I saw a my ct & pet scans together on a computer. My lungs were almost totally lighted up.

We are not a can of soup, we don't have an expiration date. Herceptin is a targeted drug and has worked very well in women I know who were HER2+.

Best,

DJ

By 2xnow
Posted November 7, 2009 at 8:18 pm
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I read your note and see that you are also from Illinois. Don't know where you are going for treatment, but maybe a second opinion would not hurt. I don't believe in today's medical field that there is nothing else they can do - maybe 10 yrs ago but not today. There are many new advances being made every day and maybe you are not at the right facility for the type of cancer you are dealing with. This is only a suggestion. I also have bone mets and lung cancer (pleural effusion). I was told "treatable" but no remission. Don't just give up because two drs said they did not know of anything else they can do.

By cat7
Posted November 8, 2009 at 12:25 am
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MRSMAS,
i'VE BEEN ON HERCEPTIN SINCE 1/2009. i WAS ALSO STARTED ON TAXOTERE AND A TRIAL DRUG AT THE SAME TIME. D/CED TAXOTERE 4 MONTHS AGO. i FIND HERCEPTIN TO BE VERY TOLERABLE WITH VERY FEW SIDE EFFECTS. THE TAXOTERE ABOUT KILLED ME. OH YEA YOU CAN KEEP YOUR HAIR ON HERCEPTIN. HERCEPTIN IS THE WONDER DRUG FOR US HER2+ gals. i was stage 4 with mets to liver. total size of tumors were 16.8 cm now they are 2.8 cm.

By linskate
Posted November 8, 2009 at 7:36 am
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I have been on herceptin since Jan 09. I find it very tolerable and tumors have shrunk signicantly or remain stable in liver and lungs, plus small scattered lesions in bones. I am on navelbine along with the heceptin and get weekly infusions. Herceptin seems to be the mircles drug for her2 positive. Good luck and hope you have great results.

By chloemom
Posted November 8, 2009 at 8:14 am
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I've been on Herceptin since April 2007 and at times have
had it in combination with chemo drugs but since Dec. 08 have just been on Herceptin. It's been very easy for me for the most part, occasionally I'll get chills and a fever for about 24 hours but that usually happens when I have some other bug to deal with. Other than that, no side effects what so ever. I even take it now without Benadryl as a pre-med.

I have liver mets and this year got two brain mets. The
Herceptin has kept the liver mets under control. One of the Brain mets was to large to gamma knife but it has now started to shrink and the neurosurgeon believes that the Herceptin is now able to cross the blood/brain barrier and is having some positive effect!

I agree that you might want to consider a second opinion. There are numerous people on this site who have lung mets, are way beyond the timeframe the doctor mentioned to you and are doing well. Good luck with your decisions!!

By Beachbabe
Posted November 8, 2009 at 10:46 am
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O.k. sister friend, I want you to sit down and take your shoes and socks off. Look at the bottom of your left foot. See anything? I didn't think so. Look at the bottom of your right foot. Anything there? Nope, right? Don't let those rotten statistics or gloom delivering docs tell you that you have an expiration date. If you had one, it would be stamped on the bottom of your feet like a carton of milk. Only the Big Guy knows for sure how long you can continue muddling along with this specific type of disease.

I LOVED hearing from chloe who has been dealing with this since 4/07 cause it sounds like she is far surpassing that two year window. The medical savants try to give it to us clear from their perspective. I've decided I cannot make their perspective MY perspective. O.k., got it, I have a serious illness. And I'll do everything in my power (ie. research, second opinions, homeopathic options) to keep on keeping on for as long as I can.

You don't mention if you have any children. I find they are HUGE motivators in the fight of my life. And even if you don't have kids, I'm sure there are friends and family members who make you want to stick around this party they call life until the lights are being flickered. You hang in there!

((Hugs))

By R
Posted November 8, 2009 at 10:56 am
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Get a second opinion sooner rather than later. Your onc sounds like he has given up, honestly, and don't believe the stats. My onc told me that ALL stats are at least 3 years old by the time time they are published and the world is changing very quickly for Stage IV patients...very very quickly.

Find a doc that believes you will live forever and treats you that way.

By CazzT
Posted November 8, 2009 at 5:31 pm
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Statistics make no sense. I've always had the opinion that its either 100% or 0%. Statistics are not based on you or your cancer, they are based on other people in slightly different situations so cannot ever be a good indication of what will happen to you. Even though I was told all of the 'bad' stats at diagnosis, I wasn't told by the doctors that there is more chance of me surviving for more than 10 years than actually getting breast cancer at my age!

By crazygracie
Posted November 8, 2009 at 5:38 pm
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I agree with my gals above. They are "in the know". The statistics are outdated and we are all different! And . . . everything can change in a heartbeat (hopefully for the good). There are a lot of great troopers on this site that have already beat the odds.. I think we should agree and join their army!!!

Crazy Gracie

By mrsmas
Posted November 8, 2009 at 6:09 pm
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My lung mets are not in the lining but bilaterally in the lung parenchyma themselves. The taxotere/cytoxin cocktail they gave me didn't help. According to the onc, even the TAC cocktail wouldn't have made a difference. The onc says that the lungs themselves have no nerve endings, so until the cancer hits the next thing, (which he promises it will) I won't experience any pain.

That being said, I tried to get a second opinion once before, but my insurance ran me in circles so that it didn't happen. There is a Komen clinic one hour to the south of me. (not in my plan, naturally) I'm thinking that I will call them tomorrow and see what they would charge me out of pocket for a 2nd opinion. At the end of December my husband's job is being dissolved, so we will be struggling to afford cobra on unemployment.

Although I started as HER+, the fish studies revealed that I am actually HER-. Does the herceptin works as well?

I am reading Susan Summer's book called Knockout. Does anyone have any opinions about it? She references a doctor Burzynski in TX that believes that the growth of the cancer cells is controlled by antineoplastons and hormones. He supposedly has a high success rate of positive results by determining the individualized genetic signatures of a person's breast cancer through blood work. They call it a "botique" treatment. Anyone hear about this?

By momx4TNBC
Posted November 8, 2009 at 6:09 pm
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Stage II at diagnosis, double mast TACx 6 mos, triple negative bc, 1 year scans lung mets, chemo x 4 (taxol, carboplatin, avastin, zometa), then wedge resection surgery of lung, then same chemo x 5. Now, no evidence of disease on last scans...still on avastin every 3 weeks, very tolerable....Agree with all the above, NO EXPIRATION DATES STAMPED ANYWHERE!! I would definitely get a 2nd opinion SOON, preferably from major cancer center or teaching hospital. Look into some clinical trials and don't give up HOPE! I have met several women who have lung mets who are 5, 10 15 even 1 lady who was 30years out with stage 4, mets off and on for years, lung...liver, bones...There are lots of drug options out there you just need a doc who is willing to try....Hope you hear some good news soon! Christi

By texasdj
Posted November 12, 2009 at 9:47 am
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I have had lung mets for 11 years and have only been on hormone therapy. I am ER+/PR+/HER-. Started with a trial hormone drug at MD Anderson for 8 1/2 years then drug manufacturer stopped trial, went on Tamoxifen for 2 years and it quit working, now on Arimidex for 2 years and so far it is still keeping things stable. My doc said there are several other hormone treatments available before he would even consider chemo. Some he mentioned are letrozole (Femara), exemestane (Aromasin), fulvestrant (Faslodex), megestrol, and fluoxymesterone. He said he would try all the hormone therapies before considering chemo. I would get a second opinion if you are ER+/PR+ and are not being offered hormone therapy.

Debbie

By mrsmas
Posted November 15, 2009 at 2:22 pm
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Here's an update after my most recent visit to the onc. Because I was actually HER2- he did not put me on Herceptin. Instead he has put me on arimidex. I started that on Wednesday. I will go back on 1/12/2010 with a new chest xray in hand to see if it is working. \

Since that visit I decided to try again for a second opinion somewhere, and ventured into our national network for a look see. Since I had gotten 3 different phone calls about the "World News Tonight" article on lung cancer (not applicable for me) I thought that might be a "sign" from God, so I checked, and sure enough, Massachusetts General in Boston is in my plan. I called them and arranged a visit on 12/8 for a second opinion. I had to fax a boatload of documents most of which I already had on hand. We will fly out of Moline IL on Dec 5 to insure the cheapest rates and still get there a little ahead of time. Since they couldn't tell me how long this would take, I scheduled the return home flight on 12/12.

It sounds like this hospital is cutting edge, so I believe that if there is any treatment not yet being considered that should be, they are likely to know of it.

Welcome to Inspire!

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