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Acinic Cell Ca. Parotid Gland and Mestastases to Neck Lymph Nodes., Stage 4

barbaraadele
Posts: 8
Joined: Feb 2012

I have Parotid gland and metastases to neck lymph nodes. Three surgeries, all failed to excise. Metastasized to neck lymph nodes. Is there any chemotherapy or any threatment for this acinic cell ca? I was told just surgery. I had radiation also. Neck tissue is very scarred and thick and damaged. Fearful of fourth surgery as cancerous nodes not seen and possible facial nerve sacrificed next surgery.
Any help with any treatment besides surgery?

longtermsurvivor's picture
longtermsurvivor
Posts: 1845
Joined: Mar 2010

Sorry to hear of the dilemma. There is a poster here who has dealt with metastatic Parotid cancer for quite awhile. He was on the board posting just yesterday, but it is my belief he doesn't come here every day. His is a story of frustration as well, as this can be a very difficult cancer. He posts under the name mixleader. You might PM him in order to make certain your situation catches his attention, but it is my belief it will anyway as you have parotid in the title.

Wishing health for you.

Pat

LeoS2323
Posts: 147
Joined: Mar 2012

Hi longtermsurvivor

Is this the same as MEC which also seems to originate in the parotid gland most of the time?

mef
Posts: 5
Joined: Aug 2013

How do I access the poster? 

mef
Posts: 5
Joined: Aug 2013

I have mets to lungs, from parotid, very aggressisve, i too am getting message wait, start chemo, get in a trial, etc, I dont know what todo. I want to keep working etc, I feel good,Treatment is at MD Anderson, would have to be out of netwrk pay down savings to achieve this, want to to what I can to survive,

debbiejeanne's picture
debbiejeanne
Posts: 3026
Joined: Jan 2010

that option is at the top of page of topics.

dj

mixleader
Posts: 267
Joined: Oct 2010

I also have cancer of the parotid gland (right side). Mine, however, is a ductal cell carcinoma. I had two surgeries and radiation and then it spread to my lungs and spine. At first my Docs could not figure out what chemo might help, so they did a biopsy of a lung tumor and then they did a genetic sequencing to see what chemo might help. They chose sutent for me and so far, it is showing some promising results. My prognosis, unfortunately, is not good, but if the sutent continues to work, it may buy me some time. The cancer took out my facial nerve and my right side face is paralyzed. They also removed enough muscle tissue from my face that my jaw doesn't work right and I have TMJ disorder and I get lots of pain from that. I wish you luck on your journey and I sure hope yours turns out better than mine has.

Roger

barbaraadele
Posts: 8
Joined: Feb 2012

Please tell me what occurs when facial nerve is sacrificed. I had three surgeries and all the "top" surgeons missed the easy to locate lymph nodes and did not get wide margins on parotidectomy. Is a fourth surgery too dangerous to neck after three surgeries and 32 IMRT radiations?

Canuckie
Posts: 3
Joined: Jan 2012

I have had two surgeries for my acinic cell carcinoma in the right parotid. The last surgery had positive margins so the doctors were unsure how to proceed. The said that a third surgery will risk my facial nerve too much and I would most likely have some paralysis. I was told by one doctor that if I chose radiation first saving the facial nerve was impossible, another doctor told me it was possible just difficult. I am starting on monday my 30 rounds of radiation, I am taking the chance that radiation gets rid of whatever cancer remains. I want me facial nerve. There are a couple of branches to the facial nerve, one that controls her eye lids and brows, one that controls your cheek region and one that controls your lips and chin muscles. If all branches are paralyzed, then you may have the appearance of someone who has had a stroke or Bell's palsy.

barbaraadele
Posts: 8
Joined: Feb 2012

Please tell me about facial nerve sacrifice surgery. What to do? Reconstruction?
What to ask about? I need guidance, please.

Jadedtraveler
Posts: 3
Joined: Mar 2012

It was only during the operation on the parotid that the surgeon came out to tell me that he had to resect my wife's facial nerve, which the cancer had invaded. He sewed it back up afterwards, using a nerve taken from her neck. The first six months were rough, but over time, my wife regained most of the motion in her face. Soon, the wrinkles appeared (a good thing, as it showed the muscles were back in business), and her smile returned (still a little crooked, but endearing), and now, you would be hard pressed to notice anything wrong. Nerves grow. They don't always grow the way you want them too, but progress will happen. Wishing you the best.

Jadedtraveler
Posts: 3
Joined: Mar 2012

Hi All,
Seeing that this is a recent thread, and we are in the midst of treatment options, I thought I should post our situation. My wife, 56, has Acinic Cell, and went through two operations and radiation. She underwent an initial operation 2 1/2 years ago, which removed the tumor from her left parotid gland, which unfortunately included resecting the facial nerve. She has made great strides with paralysis over the past two years, as the nerve graft appears to have worked well, and most people do not notice anything wrong. (She also had a gold weight in her eyelid to help it shut, but this has been since been removed.) Post-operative radiation to the neck area lasted seven weeks. 16 months ago, she underwent another operation for a wedge resection of her lung, from which she recovered well, and is now quite physically active (tennis, swimming, hiking). But our most recent PET scan last week showed more mets in her lungs. Surgery is not an option. Instead, we are going to try Chemotherapy to try and halt progression of the disease. When the lung tumor was taken out, we sent it to the Weisenthal Center in California for testing (Whole Cell Cytometric profiling, using live tumor). Plus the doctor at Huntsman Cancer Institute (where all surgery and radiation took place) is doing a CARIS Panel, using the same tumors to find its markers. Between the two, we hope to find an effective agent to stymie this disease and turn it into a chronic condition. Has anyone been using Chemo for acinic? Has it been effective. If so, what chemos are being used? Also, has radiation to the lung been tried by anyone here?

Any help we can give or receive helps us all. Thanks so much for letting us be a part of this shared struggle.

barbaraadele
Posts: 8
Joined: Feb 2012

Thank you for replying to me. Please tell me how your wife is progressing, I care. Did you find any Chemotherapy for her acinic cell ca.? I would like to know for my own acinic cell condition. Any other treatment known? I am just told, after three failed surgeries and radiation , that there is only surgery for acinic cell, but when I contacted three other hospitals, I was told they do treat it, but my surgeon says no chemo for me. I also had mastectomy and chemo same time as parotidectomy and neck lymph node dissections and surgeries. Tough. My body did not tolerate breat chemo and it was stopped after two sessions with severe complications. What chemo did you find for acinic cell?
I am grateful to you for any information.

Jadedtraveler
Posts: 3
Joined: Mar 2012

Hi Barbara,
We have just come back from the doctor, who has given us three options. One is observation (do nothing.) The second is to start CAP chemo, which contains three agents: Cisplatin, Cytonxan and Adriamycin. The third option is a clinical trial now underway, which is an experimental drug called Dovitinib. Our doctor thinks that the clinical trial is our best bet to stop or slow progression of the disease. We had profiling done on a resected tumor from the lung, by Weisenthal. They use Cytometric profiling, using live cells which they subject to testing by a long list of chemicals. They found Cisplatin to be very effective. We also had molecular testing done via a Caris Panel, which found Cisplatin to be "associated with lack of a clinicial benefit. Thus, the two results -- one molecular and largely theoretical versus one tested with live cells from the actual tumor -- seem contradictory. And this is confusing to me. After all, this is Science, both using a scientific method, but coming up with different results. The gravity of making the right choice is quite heavy. The doctor indicated that the Dovitinib would have far less side effects, but from reading the literature, there is little assurance of this. (They say, for example, "more than 10 percent" suffered these side effects, not "less than 10 percent," so there is no way of judging real risk.) So, we are looking for a qualified second opinion, but as yet, do not know where we will go. Well keep you posted if you wish. Stay strong.

barbaraadele
Posts: 8
Joined: Feb 2012

I care about your treatment.You stated three options, do nothing, CAP (cisplatin Cytoxan and Adriamycin, and clinical trial with Dovitnib. What did you go with? How are you progressing. Let me know, I am supportive of you, friend. Barbara Adele

ChristineMS
Posts: 4
Joined: Oct 2011

Hello all,
I was diagnosed last June 2011 with advanced acinic cell carcinoma in the left Parotid Gland and it had spread to 6 lymph nodes. They did remove the whole Parotid Gland and 47 lymph nodes. I had 30 radiation treatments after that. They were so sure they got it all because of the radical treatments. I did have some paralysis on my left side of my face. The tumor had wrapped itself around my facial nerve but the doctor was able to layer it off with no permanent damage to the nerve. I did still have some numbness in my face as of this year.

In February of this year I noticed a small bump by my jaw in the incision line. The doctor said is was just scar tissue from the raditation. Well it is not. It is growing. I had developed pneumonia in Feb. and then about 4 weeks ago I noticed the bump was getting discolored and bigger and I was having a terrible time breathing.
I was sent for a Cat Scan of my head,neck and upper body which showed it was cancerous. As soon as the doctor was the lump he knew it was back without even looking at the results of the scan. It is still growing.

I was diagnosed with a lung disease which my mom confirmed that I had when I was in Kindergarten. Now I am 57 and just finding out I had Hystoplasmosis when I was young and it never goes away. But there is some concern about the lungs they are looking to see if the cancer has spread there. The doctors have also found some new spots in my chest.

I see a Pulmonary specialist on Monday. I then go to my ENT on Wednesday.

I am told that if everything comes out clear everywhere else the ENT will remove the tumor. He said that is not the problem it is operable but I will have a paralyzed face due to the tumor is growing on the nerve again.

I am then told that if it spread to my lungs there is nothing they can do but we would have to revisit that if we have to. The doctor told me not to give up on him because he isn't giving up on me. He doesn't think the cancer would have gone into my chest because that would be very rare for it to spread that far. So they aren't sure what is there. I felt nothing was going on in the lungs just had too much pain and congestion in my chest area. Doc wants to get a biopsy on what is there to check it all out.

So hopefully I have all of that done before the end of the week so I can know where I go from here. I am already having problems with my face and eyes. My eye sight is not as good and my eyes keep just shutting or they are becoming very sensitive to the lights. My left eye won't close as often as the right and my brow doesn't raise up and down. Lots of numbness in my left side of face. So I am getting a bit antsy since the last time it was so aggressive.

So I will keep you all posted on the outcome. Please keep me updated on how all of you are doing! It really does help having others to talk to about this. I am overall doing great with my attitude but have my days of getting angry and frustrated. I feel bad for my husband and children having to go through this again.

My doctor told me no Chemo because it has not shown that it will help with this form of cancer.

Mostly I feel good but am getting more tired because I don't sleep well at night because of the pain in my jaw that travels up into my head. But I take some pain pills that help that too.

Christine

wagongirl
Posts: 1
Joined: May 2012

Hi, all...I was diagnosed with ACC in my right parotid in December, 1996. I had a partial parotidectomy (they got the whole tumor and had a good margin). I was Stage 1, low-grade malignancy. My physicians and the tumor board members decided to give me no follow-up treatment (no neck dissection or radiation) due to my age (I was only 23 at the time). They felt the radiation treatment would put me at a higher risk of developing a secondary type of cancer later in life. I am going in for a follow-up appointment on Monday for a small lump on my uvula...have no idea if it's related or not. My fingers are super-crossed that it's not....as you all know, recurrence is never far from mind. Over the 15 years since my original diagnosis, I've gone in for annual or bi-annual chest x-rays, and have had just a couple of head MRIs.

I'm sure many of you know about Edgar Stoke's website, www.aciniccell.org, but I wanted to post it here in case you haven't seen it yet. He lived with ACC for a long time, and I do think he had some chemo on and off. That might be a good place to start in terms of chemo options? He was a devoted chronicler of his disease, and probably knew more about ACC than anyone else in the world. I just wanted to offer that site in case people on here didn't know about it. Good luck to everyone...and keep posting! There aren't that many of us, so we are each others' best resource!!

Stacylynn01
Posts: 1
Joined: May 2012

I was just curious as to who else on here got it at a young age? I was diagnosed 1 mo before my 21st birthday and just got the drain tube from my neck out a week prior to the birthday in 2009. I am going in for a recheck ct and chest rads next week. I elected to have radiation afterward for 30 treatments. It was a low grade malignancy, grade 2 I think because two of the lymph nodes came back positive for involvement. I think they took out 9 total. I feel kind of cheated out of my young years in having to deal with this disease. Even though it was two years ago, it's always in the back of my mind. I'm 23 now.

mef
Posts: 5
Joined: Aug 2013

What did you do? This is August, 2013. Where did you get t reatment, what did you decide to do? How are you?

mef
Posts: 5
Joined: Aug 2013

Is there anything current? 2013?

phrannie51's picture
phrannie51
Posts: 4091
Joined: Mar 2012

Maybe post this as a new thread, and you will get more responses.  This thread is 18 months old.

p

mef
Posts: 5
Joined: Aug 2013

I am just learning how to work this, thanks New thread where?

fishmanpa's picture
fishmanpa
Posts: 1164
Joined: Jan 2013


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phrannie51's picture
phrannie51
Posts: 4091
Joined: Mar 2012

Fishmanpa put the link into his thread....if you click "Post new Forum Topic".....it will put it in the right place ..Smile 

p

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