Clear-Cell Adenocarcinoma, anyone?

• By faith50
• Posted February 26, 2009 at 7:55 am
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I'm been in remission of 1c clear cell for 15 months. I've read many posts of long term survivors of clear cell and it sounds like you are following the same treatment plan I did. You will probably have a PET scan after you have finished all of your chemo to determine if you are in remission. Then you will go in every 3 months for a physical and blood work.

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• By koh847
• Posted February 26, 2009 at 9:16 am
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Hi Sarah...I too have clear cell, IIC. I had surgery in November and will finish chemo the first week of April. I am on carbo/taxol as well. I have heard of several long term survivors. Search clear cell in the seach box and you will find other discussions that you may find helpful. (I keep a list and there are at least 19 of us on this site)

I have heard that although clear cell is more agressive, the cells are differentiated and may respond to chemo better than other types of cells. (the chemo sees the cells as particularly foreign if that makes sense). Do you know what stage you are?

The other thing about clear cell is that it is fairly rare...i understand about 5% of all ovarian cancers are clear cell. With such small numbers, data is not as readily available.

I will add you to my friends list and we can chat more if you would like.

:)Kim

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• By verlinda
• Posted February 27, 2009 at 5:55 am
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Sarah,

I had clear cell, Stage 2B, 6 rounds of carbo/taxol. I've been in remission since the last chemo, Nov. 1, 2007.

My gyn/onc. told me two encouraging things:
1. The chemo does more easily hunt down these cells because they are so different.
2. In response to a question about having tumors tested to see which chemos are most effective, that he's not sure where he stands on that. He said many times the only treatment he's had left to give a patient is one that research says won't work. The patient says, "Go for it, anyway," and it works.

I did not do any kind of maintenance chemo. I felt my body had been through enough. At the time, the experimental maintenance was more taxol. I had a fair amount of neuropathy and saw nothing definite to gain from it except more neuropathy.

That study is older now, so that may have changed.

Let me know if I can help in any way. This is a great place to come for questions, empathy, to express anger, to ask for moral support, and just to know you're not alone.

No question is too small, too silly or too self-centered.
(I don't mean your question fits any of those categories; only that sometimes people are afraid to ask things because they think their concern is one of those three.)

Blessings.

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• By Roxann
• Posted February 27, 2009 at 10:04 am
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Sarah,
I was diagnosed stage 1C clear cell in August 06 and completed 6 cycles taxol/carbo in December 06. I have been in remission since then with Ca 125 in single digits and negative scans. I have my ca 125 checked quarterly and so far so good. Besides neuropathy in my toes which has slowly improved I am doing OK. Because of the clear cell diagnosis my gyn/onc wants to see me quarterly for 5 years and I am fine with that. I am encouraged by the number of clear cell survivors on this site.

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• By gpawelski
• Posted February 27, 2009 at 10:33 am
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Clear cell ovarian cancer is the most difficult to treat even when the malignancy is still confined to the ovary. Clear cell tumors may have an ominous prognosis despite apparent local disease. They are referred to as undifferentiated, because their exact cell of origin cannot be determined microscopically. These tend to grow and spread quickly.

Clear cells or those that are more poorly differentiated have a worse outlook. If the tumor has involved the capsule of the ovary, or if fluid in the abdomen (ascites) contains malignant cells, the outlook is poorer than average.

There is a clear relationship between platinum resistance and tumor differentiation. Poorly-differentiated tumors are significantly more sensitive to platinums than are well-differentiated tumors. Single-agent platinum may be the most appropriate first-line chemotherapy for poorly-differentiated tumors. In contrast, Taxol resistance is not related to tumor differentiation. Taxol may be more appropriate for well-differentiated tumors.

The original American cooperative group trials of platinum versus non-platinum combination therapy showed that the main group of patients who benefited from platinum were patients with poorly-differentiated tumors. This has been validate by cell culture analysis.

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• By cburns
• Posted February 27, 2009 at 9:09 pm
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Hi-

I had clear cell ovarian cancer and went through the 6 treatments of taxol/carbo. I have been cancer-free ever since my last treatment in Oct. 2006. I went two years with quarterly check-ups, then I graduated ! to every six months. I am gradually forgetting my cancer. I didn't think that was possible.

Cathy B.

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• By BarbP
• Posted February 27, 2009 at 11:43 pm
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Some part of my cancer areas were clear cell...diagnosed in 3/06....IP carbo and taxol..6 treatments....CA125 is 7....was almost 6000 at diagnosis...so far, so good...Barb P

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• By jethro
• Posted February 28, 2009 at 6:47 pm
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I'm another clear cell OVCA. I am doing a new clinical trial of Doxil and EC 145 because I was platinum resistant. This cancer is pretty rare here in the states, but accounts for about 30% of OVCA in Japan so that is where the research on Clear Cell is happening. Personally, I feel that the doctors need to look at designer specific treatment for YOUR cancer, not just the general numbers.
I hope the carbo/taxol is working for you.

Best of luck
Jethro

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• By MarthaMcQ
• Posted March 1, 2009 at 7:52 am
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Hi Sarah, I had stage IIIa, grade 3, highly undifferntiated and aggressive clear cell ovca, diagnosed in October 2004. I did the standard 6 rounds of carbo/taxol and then an additional year of taxol. I went for a 2nd opinion at M. D. Anderson in Houston and was told this type of ovca often does not respond to chemo. In other words, a poor prognosis.

I have a deep and abiding interest in complementary modalities so I started right away doing everything I could to help my body through all of this and I have done well with no recurrence. This October will be the 5 year mark for me! :)

Blessings,
Martha

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• By libbyshope
• Posted March 2, 2009 at 7:27 pm
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Hi Sarah,

In terms of additional information, I have posted many medical articles and abstracts re ovarian clear cell carcinoma (CCC) under the Libby's H*O*P*E* homepage caption entitled "Types of Ovarian Cancer" (http://healthinfoispower.wordpress.com/diagnosis/).

It is true that CCC tends to be chemo resistant, possibly due to a low Ki-67 (cell proliferation) labeling index. For this reason, you often hear the CCC prognosis described as "poor." But, this characterization ignores the fact that CCC possesses unique biological and clinical characteristics when compared to other types of epithelial ovarian cancer. Such unique characteristics represent potential targets for existing and developmental treatments (e.g., see unique characteristics of HER-2+ breast cancer that lead to the development of Herceptin, a the novel targeted therapy).

Recently, many new agents with specific molecular targets (which are present in CCC tumor cells) have been developed or are in development. These targeted agents offer great potential and are set forth below.

1. Human adenovirus type 5 E1A - See "Adenovirus type 5 E1A gene therapy for ovarian clear cell carcinoma: a potential treatment strategy," Molecular Cancer Therapeutics 6, 227, January 1, 2007 (http://mct.aacrjournals.org/cgi/content/full/6/1/227?maxtoshow=&HITS=10&hit s=10&RESULTFORMAT=1&andorexacttitle=and&titleabstract=gene+therapy&andorexa cttitleabs=and&andorexactfulltext=and&searchid=1&FIRSTINDEX=120&sortspec=re levance&fdate=1/1/2006&tdate=3/31/2008&resourcetype=HWCIT).

2. gefitinib (Iressa) - EGFR is detected by immunohistochemical (IHC) staining in approx. 61% of CCC tumors and may be a therapeutic target for patient with CCC (i.e., pathology testing would have to indicate that your tumor "overexpresses" epidermal growth factor receptor (EGFR) protein).

3. Vascular endothelial growth factor. -- Neovascularization is essential for tumor growth and it is induced by several growth factors, including vascular endothelial growth factor (VEGF). Overexpression of VEGF have been shown to be a poor prognostic factor in ovarian cancer, and VEGF is thought to be one of the most promising targets of therapy.Three antiangiogenic drugs, bevacizumab (Avastin), sunitinib malate (Sutent), and sorafenib (Nexavar), have been approved by the United States Food and Drug Administration for treatment of patients with specific types of cancer. All three drugs are also being used in ovarian cancer clinical trials.

4. Liposomal siRNA. A considerable amount of preclinical development work is being conducted by Anil Sood, M.D., M.D. Anderson Cancer Center. Learn more at Libby's H*O*P*E* (http://healthinfoispower.wordpress.com/2008/03/25/liposomal-sirna-genetic-o noff-switches-that-target-ovarian-cancer/).

5. Renal clear cell carcinoma treatments. In an article entitled, "Gene Expression Profiles of Serous, Endometrioid, and Clear Cell Subtypes of Ovarian and Endometrial Cancer," Clinical Cancer Research Vol. 11, 6422-6430, September 15, 2005 (http://clincancerres.aacrjournals.org/cgi/content/full/11/18/6422), researchers at NCI and the Memorial Sloan-Kettering Cancer Center made a provocative discovery regarding CCC of the ovary. The conclusion reached as part of gene profiling testing was as follows: "The comparison of the gene expression profiles of endometrioid and serous subtypes of ovarian and endometrial cancer are largely unique to the combination of a particular subtype in a specific organ. In contrast, [all] clear cell cancers show a remarkable similarity in gene expression profiles across organs (including kidney) and could not be statistically distinguished." In short, the researchers found that the gene expresson profile for clear cell carcinoma of the ovary and clear cell carcinoma of the kidney was statistically indistinguishable. This fact has also been acknowledged by two researchers at Massachusetts General Hospital. See "Potential benefit of Sunitinib in recurrent and refractory ovarian clear cell adenocarcinoma," Int J Gynecol Cancer. 2008 Sep-Oct;18(5):934-6 (http://www.ncbi.nlm.nih.gov/pubmed/18081793?ordinalpos=72&itool=EntrezSyste m2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum)

Notably, 80% of renal (kidney) cancers are of clear cell histology, and there exists several drugs in this area that, in theory, could be used to treat CCC of the ovary. Everolimus (RAD-001) is one of the most promising. Everolimus works by blocking a protein known as mTOR, thereby disrupting the growth, division and metabolism of cancer cells. The drug performed extremely well in patients that stopped responding to Sutent and Nexavar. See American Society of Clinical Oncology (ASCO) 44th Annual Meeting: Abstract LBA5026. Presented May 31, 2008 (http://www.asco.org/ASCO/Abstracts+&+Virtual+Meeting/Abstracts?&vmview=abst _detail_view&confID=55&abstractID=30436).

Everolimus has already shown effectiveness in vitro and in vivo against ovarian cancer based on work performed by Japanese (http://www.ncbi.nlm.nih.gov/pubmed/19121088?ordinalpos=2&itool=EntrezSystem 2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDoc Sum) and Fox Chase Cancer Center (http://www.ncbi.nlm.nih.gov/pubmed/17363557?ordinalpos=5&itool=EntrezSystem 2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDoc Sum) researchers . Everolimus is currently being tested in "solid tumor" trials, often in combination with other drugs (http://clinicaltrials.gov/ct2/results?term=everolimus+and+solid+tumors&recr =Open).

Avastin, Sutent, and Nexavar are used as 1st line treatment for renal cell carcinoma, while everolimus is considered a second line treatment. These drugs, as noted above, could be used against CCC of the ovary.

5. Voreloxin (SNS-595): See Libby's H*O*P*E* (http://healthinfoispower.wordpress.com/2008/05/31/voreloxin-sns-595-produce s-48-disease-stabilization-in-treatment-resistant-ovarian-cancer-patients/).

6. EC145: This treatment is being used in the "PRECEDENT" clinical trial along with pegylated liposomal doxorubicin (Doxil). See Libby's H*O*P*E* (http://healthinfoispower.wordpress.com/2009/02/20/endocyte-begins-phase-ii- clinical-trial-of-ec145-for-treatment-of-women-with-platinum-resistant-ovar ian-cancer/).

Sarah, I hope the above provides you with some additional insight regarding treatments in existence and in development that could be used to battle CCC should the standard of care treatment (i.e. generally Taxol & platinum drug) be ineffective.

It seems to me that CCC should be aggressively pursued by U.S. researchers because of its unique genetic qualities, much like the approach Dennis Slamon, M.D. Ph.D. took with HER-2+ breast cancer and the development of Herceptin. But, as one individual commented, CCC represents only a very small percentage of epithelial ovarian cancer cases in the U.S. In contrast, CCC represents the second largest subtype of epithelial ovarian cancer in Japan. You will note that a majority of the medical abstracts relating to CCC are written by Japanese researchers.

Also, keep in mind that CCC histology classification depends upon a predominant finding of CCC cells within the tumor. A prognosis could vary based upon the percentage of the tumor that constitutes CCC (i.e., pure type clear cell tumor versus part clear cell tumor makeup).

I hope this information is helpful. If you have any questions, please feel free to contact me at Libby's H*O*P*E*.

Best Regards,
Paul Cacciatore (libbyshope@gmail.com)

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• By SarahSagehen
• Posted March 3, 2009 at 12:50 am
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Paul,

Thanks! I'm gathering my thoughts so I can ask my Gyn Oncologist for a clear plan of action going forward. Your feedback is going to be very useful.

Best regards!

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• By libbyshope
• Posted March 3, 2009 at 3:10 pm
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Sarah,

Your most welcomed. The creation of a clear plan of action going forward is an excellent step. Just remember that "education increases survival." Keep the faith, keep reading, and keep fighting.

Best, Paul

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• By MinnieM
• Posted April 6, 2009 at 4:56 pm
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How many treatments did you have before they determined that you were platinum resistant? I completed a first round of chemo, and just learned that my CA-125 has not gone done. It hasn't gone up; so, we're doing a second round, but obviously I'm worried.

It also went up after surgery. I was diagnosed as Stage 1 C clear cell. Initially my prognosis was pretty good, but now I'm worried; my doctor is concerned, and says let's wait and see how the second round goes.

Any information you can share would be greatly appreciated.

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• By jethro
• Posted April 6, 2009 at 8:17 pm
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Minnie:

After surgery, my number was in the mid 300s, then rose to around 480 before chemo 3 weeks later.
The numbers dropped down to around 281 after the 1st chemo (what my doctor later said was killing the hanging fruit from the trees). After the 2nd chemo it went to 289, after the 3rd up to 291, then delayed chemo for two weeks while going down to MD Anderson for a consult. They recommended I finish 6 round of the carbo/taxol though I was probably platinum resistant in order to be eligible for any trial. Well after my 4th chemo my numbers rose to the mid 400s. We stopped that chemo and I'm now in this clinical trial. What the doctors all told me was that they want to see the numbers in a downward trend after each chemo....
Questions for you...when did you do the ca125 test after the 1st chemo? Usually they take it the day of the second but your post sounds like you did the test earlier. Also exactly what have been your numbers...pre and post surgery? I'd be happy to talk to you more about this if you'd like. If I were you I'd do the second chemo to see if it goes down.

Best of luck to you!
Teresa/Jethro

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• By MinnieM
• Posted April 7, 2009 at 1:23 pm
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When I had my first blood test, my number was 229. I had surgery two weeks later, and then chemo 3 weeks after the surgery. The day before chemo, so approximately 5 weeks after the first test, they tested again, and it was up to 431. Three weeks later before I was supposed to have my second chemo, my number was up to 435. I've had to delay chemo for a week because of low wbc, but am not optimistic that the second treatment will be any better.

The game plan is to do 3 treatments, then a CAT scan. I'll comply, but I hate to think that the treatment that is destroying my wbc and my hair is doing nothing to kill my cancer.

I'd like to hear more about your clinical trial since that may the route I'm headed.

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• By ovagal
• Posted April 8, 2009 at 3:05 pm
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Hello Sarah,
I was diagnosed with clear cell 1C in Feb. 03.
I had six rounds of Cisplatin and Taxol. Thus
far, I have remained in remission and pray that
you will, too.
Ovagal

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• By MinnieM
• Posted May 26, 2009 at 1:45 pm
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Sarah,

I hope you are doing well, and wanted to refer you to a study (see link below) that supports what my doctor told me -- clear cell does not necessarily have a worse prognosis that other cancers even though it is considered more aggressive. Staging, age of patient, and optimal debulking are better indicators.

Hope you are doing well, and can be one of those long term survivors who encourages us other clear cell gals.

http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6WG6-45GMDK2-64&_ user=86629&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000006878&_vers ion=1&_urlVersion=0&_userid=86629&md5=5efe8fc82a649b422c4aec8cb443ffa5

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• By demelza
• Posted May 27, 2009 at 5:02 pm
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Hi Kim and all,

I guess you can add me to the list of clear cell on the site. I was diagnosed following a hysterectomy in Dec. 07 and started 6 months of carbo/taxol which I finished in July 08. Mine was 1b clear cell and I too found it frustrating to locate information about this type. But I went with the recommedations of 3 different doctors and did the treatment - mine was every four weeks instead of what I've heard is more typical - every 3 weeks. I assume the doses were different but don't know. So far so good on follow up. I'm not positive but I don't think my CA-125 was ever very high, certainly never over 50 or 60. Its at 3 and 4 now. Be interesting to see if people have different baseline normals for CA-125 - like my regular temperature is below normal; resting pulse is higher, that sort of thing.
Sarah, best wishes on your course of treatment. As always there is good info here from everyone and hope it all helps during a very difficult emotional time.

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• By BadMareDay
• Posted May 28, 2009 at 11:39 am
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Count me in. I was diagnosed as stage 1c, clear cell December 2004. I began chemo in Jan 2005.

Then I had a freak thing happen, my appendix burst this past August and they found a tumor in my abdomen. My CA-125 was 9 prior to that day. It had crept up from 4 to 6 then 9 over about a year's time. I changed hosptials, to Dana Farber, for my chemo and follow up. My second round of chemo started in October 2008 and ended with a flourish the first week of February 2009. My last chemo was in the MICU at Dana Farber/Brigham and Women's - I went through the rapid desensitization protocal becuase I became allergic to the carbo.

Now, I'm taking part in the AZD2281 clinical trial.

It's frighenting to have OvCa, as everyone knows, but this clear cell piece adds to that at least ten fold.

Take care,
Teresa

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• By up2late
• Posted May 28, 2009 at 11:40 am
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Another clear cell diagnosis here.

I went to er with abdominal pains, referred to gyn onc and had surgery 3-12. Hysterectomy, tubes, ovaries, nodes, appendix & I am not sure what else. After surgery I was staged IC clear cell. The path reports showed no sign of disease other than one ovary.

my c125 - 4 wks after surgery and before 1st chemo was zero. I have just finished my 3rd carbo/taxol.

I am also frustrated by the info. at the beginning I was told that if the side effects were too severe I would be able to stop after 4 treatments. From talking to my drs it almost sounds like guess work. Stats are there to defend any position. At IC some women just have follow up check ups. The recurrent rate for those having 3 vs 6 treatments are about the same.

At my 8 wk post op check up, the gyn onc said he should have staged it IIC and said I needed all 6 treatments, but he also said I did not need to follow up with him, a reg gyn would be able to take over from here.

I am also looking for all the info I can find. The chemo is starting to cripple my left side. I need to get my health back to be able to find employment.

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