Pulmonary Mucoepidermoid carcinoma

• By fourthgrade126
• Posted March 19, 2009 at 9:36 pm
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I'm sorry that I don't have any information to offer but I can offer you my prayers and support. I pray that you will find all the info you need to assist with you beating this disease.
Pam

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• By Denise2Dogs
• Posted July 31, 2009 at 1:26 pm
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Hi,
I was diagnosed in July 2008 with a low grade mucoepidermoid carcinoma in my left lung. Had a lobectomy, and am cancer free for 1 year now. I too am seeking info. My oncologist has never treated anyone for this type of cancer.
Hope you're doing well.
Denise

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• By lisarn710
• Posted July 31, 2009 at 2:05 pm
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Hi Denise!

My oncologist found a few research articles on the subject but it is so rare, there isn't much. He spoke with the pulmonary specialist at Mayo Clinic who diagnoses it and even they didn't have much to offer. If it is low grade (which mine was) it's treated with removal. Conventional chemotherapy has not shown to be effective in treating this particular lung cancer. It's parotid form is treated the same way and is almost 100% curable with just surgery. If it's the high grade (fast-growing) it's very lethal and most die within the first year. I was stage IB and we opted to watch. We came up with a plan to follow with serial CT scans for a couple of years then yearly until 5 years. After that he feels confident that it will not return.

It's good to hear you are cancer free at a year. I am now officially 5 months, but have only had one CT scan. My next follow up is in Sept. But I am training for a triathlon so I feel pretty good :)

Lisa

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• By Denise2Dogs
• Posted August 3, 2009 at 9:09 am
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Hi Lisa,
Training for a triathlon!!! Wow!!
Good for you. I get winded just walking up 2 flights of stairs. So did they remove your tumor with surgery? I found most of my info on MEC on the internet. Who knows how solid that info is?? About 3 years ago, I started having terrible pain in my neck, I finally went to the Dr. and he said I had 2 herniated disks and needed surgery. So they did a chest x-ray as part of the pre-op screening. That's when they noticed a lung nodule. I felt very lucky that the found it by accident and treated it early. Wise men say that things happen for a reason. I totally agree.

Peace,
Denise

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• By lisarn710
• Posted August 3, 2009 at 9:45 am
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I get winded easy but as long as I take it slow, I do okay :)

They did take the tumor with surgery. Complete lobectomy of the right lower lobe. Mine was found while being worked up for shortness of breath when I started training. It was actually pretty big (3.6 cm). And yes, things happen for a reason.

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• By LoriPax
• Posted August 20, 2009 at 7:08 pm
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Ladies,

I am glad to find some other people with that I have. I was diagnosed with MEC on May 29th. I am a 39 year old female never smoker. I had surgery May 29th and had a complete right pnuemonectomy (whole lung) and decided to go through chemo. I was staged at IIIb because of location of a 1.0 x 1.6 cm tumor. (location, location, location) I had a low grade tumor and was completely resected with clear margins.

It was a very difficult decision to decide to do the chemo. While there is no data that says it will do any good - the Dr I went to for my third opinion called several of the National Cancer treatment centers in Boston, Nashville and North Carolina. Every single Oncologist said in the absence of data, because of my age, they would give me 4 rounds of chemo. So, I will never know if this helped or not, but if I didn't give it a shot - I may kick myself later.

All of my hair has fallen out and I exercise every day trying to get to some sort of "normal". Chemo is no picnic, but I just feel like if I didn't do it I would regret it.

Every article I have found on the internet all give us a very good prognosis with surgery alone. I would love to hear more about your experiences!

Thanks,
Laurie

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• By lisarn710
• Posted August 20, 2009 at 8:29 pm
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Laurie

My oncologist and I decided to not do chemotherapy. I only had a right lower lobectomy with clean margins and no lymphnodes. I am six months post op and I'm doing well with my recovery. My first CT scan was clear and I will have my second in 3 months.

We did a lot of research and debating on the chemotherapy. Because mine was a stage 1b, everyone he spoke to felt the cost (both physically and mentally) of chemotherapy was not worth the unknown benefit. However, if it had been a higher stage, I probably would have made the choice you did.

I'm a nurse practitioner and I worked in pediatric oncology. I have seen how hard chemotherapy is. Are you doing the one treatment every three weeks regimen or the weekly?

I feel very lucky and I count my blessings everyday. If you ever have a question/concern/need to vent, feel free to contact me.

Lisa

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• By cards7up
• Posted August 20, 2009 at 8:42 pm
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This is what I found. It is very good that it is low grade. However, most of the literature I've read says it's usually in the salivary glands. Has anyone been checked for this? It can be found in the lungs and usually affects women in the fifth decade. Good luck to you all and take care, JC

http://www.oralcancerfoundation.org/facts/rare/mc/index.htm

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• By LoriPax
• Posted August 20, 2009 at 8:46 pm
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Lisa,

I am doing Carboplatin/Taxol every three weeks. I am halfway done and overall, it hasn't been too bad. The Nuelesta shots are worse than the chemo, but only last a few days. I mostly feel pretty good, just tired.

The hardest part was losing my hair, but I have to say I am impressed with what they have given me for a wig. It is a medical wig and real hair, and really looks better than my own hair ever did! I guess that's something.

I go for my first CT scan next month. I feel pretty good about it. My cancer was diagnosed from a chronic cough that was thought to be asthma. I haven't coughed since the day of my surgery.

I know we will probably never know how or why we got this, but do you ever wonder? Or do you ever stop wondering?

Laurie

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• By chevy5534
• Posted November 1, 2009 at 9:41 pm
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For Laurie or LoriPax:
My best friend has just been diagnosed with Mucoepidermoid cancer of the left lung. Where did you go to have your surgery to have your lung removed? Who did you go to for your oncology? Are you part of a clinical trial? If so where is it? Searching for answers.

Thanks,
Sally

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• By lisarn710
• Posted November 1, 2009 at 9:53 pm
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Sally,

I've been told by several different sources that it is treated by removal and that conventional chemotherapy is not useful for this type of tumor. There are no clinical trials as it is so rare, there are not enough to study. I do not live in the same area, but I am in the medical profession. I can provide you with all the information that was given to me if you would like.

Lisa

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• By LoriPax
• Posted November 1, 2009 at 11:08 pm
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Hi there,

I had my lung removed at St. Joseph's in Atlanta. I have been going through Pulmonary Rehad for almost 12 weeks, and I am remarkably better.

I chose to go ahead and do chemotherapy just to make sure I did everything I could do make sure it is gone. My surgery was supposed to be curative, and it probably was, but you never know.

I went for a second opinion and this Oncologist called several of the National Cancer Institutes across the U. S. and every single one of them said they would put me through chemo because of my age. While there is no data to support it, and so rare there are no clinical trials, I just went with my gut on this one and have finished all of the chemo. It was no picnic, I lost my hair, felt like crap and all of the things that go along with chemo, but I did it. And I am 6 months out now and no evidence of disease. I can't ask for more than that.

I'd be happy to provide more info if you like.

Regards,
Laurie

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• By chevy5534
• Posted November 2, 2009 at 11:14 pm
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Dear Laurie,
Thanks a lot for the information. I will pass it on to my friend Vicki's mother. I just contacted the M.D. Anderson Hospital in Houston and they have treated 3 patients with this in 2007. We are still gathering information, and yes I would love to get more information from you. Who was your oncologist? Where did you go for oncology? Was it at St. Josephs in Atlanta?

Thanks
Sally

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• By chevy5534
• Posted November 2, 2009 at 11:22 pm
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Dear Lisa,
Thanks for asking. Where did you have your lobectomy? Personally I did go through chemotherapy for breast cancer a year ago, and I just wanted to let you know the Taxol that some people are taking was not too bad for me. Later on you may get joint pain, but I used Glucosamine over the counter and it really helps. Its natural, its very effective and can be used as long as you don't have a shellfish allergy.

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• By gpawelski
• Posted November 3, 2009 at 11:47 am
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lisarn710

A particular situation where assay-testing might make particularly good sense is in rare cancers where there may not be enough experience or previous ideas of which drugs might be most effective. It might help you find the best option, or save you from fruitless additional treatment

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• By lisarn710
• Posted November 3, 2009 at 11:57 am
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gpawelski,

I had one of those tests and it was negative for whatever marker they were looking for so the treatment would not have benefited me. I'm actually almost 8 months out from my surgery and we decided no chemotherapy was necessary. Thanks for the information, though!! I think others out there are looking for the same answers as this is so rare. Hopefully the others can read this and have the same testing done.

Lisa

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• By gpawelski
• Posted November 3, 2009 at 1:07 pm
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Lisa

What you may have had was some type of gene expression profiling done. Some physicians may order gene expression profiling tests to enable the oncologist and surgeon to more accurately determine who should be treated and who should not be treated with chemotherapy.

However, they cannot predict chemo response (clinical responders). This is what I'm talking about. Molecular profiling is far too limited in scope to encompass the vagaries and complexities of human cancer biology when it comes to "drug selection."

Cell-based testing relies on cells because the complexities and redundancies of human biology are beyond the ken of genomics. The endpoints of molecular profiling are gene expression. The endpoints of tumor cell functional profiling are expression of cell death (both tumor cell death and tumor associated endothelial [capillary] cell death).

In chemotherapy selection, molecular profiling examines a single process within the cell or a relatively small number of processes. The aim is to tell if there is a theoretical predisposition to drug response.

Functional profiling examines not only for the presence of the molecular profile but also for their functionality, for their interaction with other genes, proteins, and processes occurring within the cell, and for their response to anti-cancer drugs.

To exploit the full potential of targeted anticancer therapies, physicians will need laboratory tests that match patients to specific drugs. Cell culture assays are able to accurately predict how an individual patient's cancer cells will respond to an array of drug combinations. It is able to quantify synergistic drug combinations and individually tailor treatment.

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