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I would like to keep in touch with everyone that has lung cancer with bac tendencies, just to see what has helped them, just anything in general. I know people have tried to start a group discussion on this but I havae not seen it materialize. So anyone with this type of cancer, lets form a group and compare notes.
thanks diane
Cancer Taxol Surgery Brain tumors Fractures Radiation therapy Avastin Breast cancer Taxotere Pneumonia Chemotherapy Pain Tarceva Carboplatin Lung cancer
Hi Diane,
I had my BAC nodule removed May 1 and had lots of nerve pain (so I use 1/4 to 1/2 of a lidocaine patch every day). I have my first CT post-op tomorrow and am excited and nervous at the same time. This all began with stage 1 breast cancer, chemo, radiation, arimidex. My stage 1 BAC showed up in Sept. and did not grow, but I had it removed, tested in path., and lobectomy May 1. No treatment until/unless it rears its beastly little head, or so I was told. No MRI of brain or bones unless I have symptoms. So a CT tomorrow at the 3 month mark and again in Feb----six months later. My surgeon hopes for cure (85% chance?), but my oncologist is less optimistic, though she is letting me have my chemo port removed Friday. (from breast chemo which I elected tho' it was not in my lymph nodes). Sooooo, I am a newbie to all this and don't have much to share, but I welcome stories from BAC buddies!
Courage and hugs and thank you for starting this,
Nancy
Hi Diane. I'm stage 4 adenocarcinoma with BAC features, with mets to lymph nodes, salivary gland, and bones. I was dx 12/07 and decided against chemo. My only treatments have been having the salivary gland removed (because it was bothering me) and having some radiation to bone mets, with another batch starting tomorrow. I also get a monthly infusion of Zometa, to strengthen the bones and prevent fractures.
Good luck.
Ellen in PA
BAC buddies, I like that.
Diane, Please keep me on your BB list.
I was diagnose stage 1B BAC Jan 2007. I Had 40% of my right lung removed. Then “Just to be sure” I did Cisplatin & Navelbine. A new tumor was discovered in my medialstenium (inoperable). Next came 33 hits of radiation with Carboplatin and Taxol, no change to the tumor. I did Tarceva & Avastin until I decided I wanted to feel healthy again. Currently I am on LDN.
Hi Diane, I was dx 7/08 with BAC Stage III in right lung and lymph node in mediastinum. August through December I had chemo - carboplatin/taxol and in January started on Tarceva. The chemo arrested the grown of the tumor and the Tarceva was working until very recently when latest scans showed progression of the tumor. Staying with the Tarceva for another 2 - 3 months and then we'll assess what to do next. Probably chemo by infusion again but I don't know what exactly.
I'll keep you posted.
Donna
I was dx with NSCLC, BAC in April of 2005. I have had a variety of treatments--and am now enrolled in a clinical trial. I have also started a blog about my experience with lung cancer if any of you are interested and haven't caught my previous posts about it (I go into detail about my treatments there). You can check it out at: http://lifeandbreath.wordpress.com
And hey--keep me in the BAC loop as well please. Linnea
I am the same too.
Diagnosed nov 06 stage 1B, then restage 1V in May, went on cisplatnin and Navelbine (no results), tarceva (no results), Alitma from July 07-april 09.
Now i am on Gemzar and Avastin, which i really really hope works.
I also do Alternative therapy to keep my immune up.
This is a good idea xxx
Hi and thanks for all of your replies. I thought it would be nice to see if there is anything new out there and share our experiences.
lets all keep in touch and let everyone know how we are doing. i wish i knew how to put us all on a list so we can keep in touch easier.
hugs to all of u
diane
Hi Diane,
Add me to the list I was diagnosed 02/2007 Currently stage 4 on Gemzar.
Had a neulasta shot on Sat so I pretty much feel like crap right now.
Linda
Hi sorry you feel so bad. It that a treatment for bac, the only thing I have heard of which is used alot is Tarceva,
I hope that it helps and you feel better soon. Did you have surgery?
Hugs diane
Tarceva didn't work for me. I had surgery in 03/07 and have been on chemo of one sort of another since 01/08. My first onc didn't want to give me any chemo and thats why I switched Oncs. Looking back, I think if I would have had chemo after surgery it may have helped contain it better.
Great idea gathering the bacs together.
Linda
well what did they remove when you had surgery and did they think they got it all... I never have had chemo, no treatment, most doctors really feel in most cases that its better to just watch and see, I guess you may have had some type of growth after surgery since they gave you chemo later on... Did it reduce the tumors, or tumor.. They say there is a fast bac and a slow one,
How soon after did you have chemo?
Just keep the faith which I know is hard at times, and I know most of us feel like we were given a raw deal and ask why??? I really try to keep my spirits up, some people are really good at that.. I am up and down.
You hang in there
hugs
diane
Keep me on the list. I was diagnosed with nsclc adenocarcinoma in March 2007. I had a LL lobectomy in 4/07 and was staged at 1a/b. In July a new tumor was detected. In 9/2007 I had a UR lobectomy and was staged 3a/b. I had chemo tax/carbo 4 doses 3 wks apart. Was NED for a little more than a year. In 1/09 a follow-up CT scan showed a suspicious nodule. The PET/CT showed activity and another questionable spot on my other lung. At this point my surgeon stated that I had adenocarcinoma with multi-focal BAC. He said that surgery at this point is not an option and likely will never be. I was put on Tarceva 150 mg daily, been taking it since March. My follow-up CT in June showed shrinkage so the Tarceva is working.
I hadn't heard that there was a small and a fast BAC. Maybe it depends on what cancer (if any) is associated with it. My onc. explained to me that with BAC tumors/nodules will pop up in your lungs at multiple sites. It is not mets - each is another primary cancer.
The side effects from the Tarceva are mostly tolerable. The diarhea that comes and goes effects my quality of life more than anything. There is no rhyme or reason as to when it will crop up. I have the rash on and off but that is tolerable. I do have quite a bit of fatigue and significant hair loss. But it is a small price to pay if it is working!!!!!
We can all be BAC buddies together! Great idea. Good bless to all. Pat
Hi, well I have the multi focal also. Yes there is a slow growing and a faster growing, usually the mucus kind is usally the worse kind to have.
The reason they dont like to do surgery on people with bac if its multifocal is because it lives on lung tissue and the more lung tissue you have the better.
I am glad that the Tarceva is working for you, it does not work on everyone..
Yes we all have to update each other and I wish I knew how to put us on a list where we can update our outcomes...
hugs
diane
Can you define Bac for me.I tried to find it on several internet sites.On my path report it said stage1 A nsclc adenocarcinoma with poorly differentiated cells.I am sorry I took time to look at poorly differentiated as I can't have the chemo anyway.I really didn't look for statistics but I tripped over some.I had just wanted a clearer understanding of what it meant.Like a lot of people share here,this does have its ups & downs.So I really not being lazy when I ask you to define.I just read enough today.Then I can answer Your question,Thanks AndiB
Taken from the National Lung Cancer Partnership brochure "Living with a diagnosis of Lung Cancer"
"Bronchioloalveolar Carcinoma (BAC) is a rare form of adenocarcinoma. The number of cases of BAC is rising worldwide. BAC spreads throughout the lung, unlike more typical cancer cells, which tend to "stick together" and form solid, individual tumors. The cause of BAC is not known. Although people who smoke can get BAC, it often occurs in people who have never smoked."
Hope this helps. There is so much information out there, and often it is incomplete or contradictory. It is hard to wrap our heads around it.
Blessings, Donna
dx'd Oct 2003 nsclc adenocarcenoma (later dx'd with BAC tendencies) stage IV. 6 cycles Carbo & Taxo. April 2004 right lower lobe wedge resections. No additional chemo at that point (2nd opinion at Dana agreed). Sept 2006 CT showed progression. Oct upper left lobe removed (some complications with fistula and unrelated intestinal surgery). April 2007 started Tarceva (supposedly had EGF mutatuon). Dec 2007 CT showed progression. Jan 2008 6 cycles Taxo, Carbo, Avastin. May 2008 started maintenance Avastin (still on it). Oct 2008 PET showed no metabolically active disease. Same for May 2009 PET.
Still playing ball.
Best wishes to all.Thank you sojourner for the definition.Diane,I think your group is an excellent idea.It is good that someone starts an idea and someone else joins in or picks it up.Wonder how many of us were good at team sports even for fun,card games etc.I digress.Good luck with the group,AndiB
Hi, well I am sure most of you have heard of Dr West's web site Grace, on there he has alot of really good articles about the bac. He does research on it and there are not alot of doctors that have researched bac let alone lung cancer, its mainly breast cancer which they have come a long way, just dont know why they cant do the same for lung cancer.
Would love to hear from alot more people out there. I am just wondering who out there has had this adencarcinoma with bac the longest. Wouldnt it be great to hear there are 10+ years survivors...
diane
Just another note--I have the mucinous variant of BAC. As Diane indicated, it has generally been very difficult to treat. The clinical trial that I am enrolled in (An ALK Kinase inhibitor) has done a great job of stopping the cancer in it's tracks (for now). The fact that I have mucinous BAC makes it even more exciting that it has been working...there is always hope, even under the worst of circumstances! Linnea
Diane, yes, you know I have multi focal adenocarcinoma with bac features and had surgery, That surgery anniversary will be the 18th of August, and my chemo of carboplatin and taxol was 6 weeks later for 4 rounds. Surgeon wanted it done within that time frame. I was 75 when I had the vats surgery and am now 76. The surgery was a breeze compared to the chemo. The surgeon at Moffitt Cancer Center in Tampa, insisted I should have chemo as almost all say that with most lung cancers there is a good chance cancer cells leak out. One thing good about it if there is anything is that it generally stays within the lungs. I have nodules bilaterally across both lungs. They were not able to even test the nodules on my right lung or check nodules(as they could not get past my heart to get to them) so I am not staged and do not know what they would call it except the T1 for the 1.2cm x .4cm x.2 cm they found on the left lung (by the way they removed 2 nodules only one was malignant) Nx and mx as they do not know if there are mets or if there is lymph node involvement. My last pet scan in May showed there was nothing lit up anyplace in my body but that does not really mean anything because a pet scan does not show the bac, only a ct scan will do that, which I will have this month. They alternate between the two.
Many do say this is over treated and maybe mine was since they could not just say it was stage 1, I suppose they had to rule on the side of caution in case it was a 1V, as far as scans show it is stable or was in March.
I am not looking forward to the scan coming up this month at all, of course I have my fears. But I am in good hands with God. God Bless all and happy to read others experience with this.
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