"Ask Me Anything" with Dr. Don Dizon.... - SHARE Ovarian Can...

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"Ask Me Anything" with Dr. Don Dizon. Join Now!

SBlau
SBlauAdministrator
67 Replies

Ask an ovarian expert anything. Join the conversation by replying to this post.

Our Ask Me Anything (AMA) with Dr. Don Dizon is starting now.

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67 Replies
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SBlau
SBlauAdministrator

Dr. Dizon, Can you tell us a little bit about yourself?

1 like
DrLin
DrLin
in reply to SBlau

Hi all- I am a medical oncologist, specializing in women's cancers.

1 like
Thumper7
Thumper7
in reply to DrLin

Thank you, Dr. Dizon! I was diagnosed w/Stage IIIc high grade serous ovarian cancer on 11/20/15. Estrogen receptive,Non BRCA. Just had my first recurrence. Started Doxil/Carboplatin on 5/18, 2nd dose is tomorrow, oh boy :). Do you feel there are viable treatment options in Germany &/or London that might benefit some of us if we are able to pursue it at some point?

Thumper7
Thumper7
in reply to Thumper7

p.s. I am a fan of MGH, I went to college near there and have run the Boston Marathon a couple of times :)

Pam (I live in CT)

2 likes
DrLin
DrLin
in reply to Thumper7

Good for you! I have NOT run the boston marathon!!! lol

2 likes
DrLin
DrLin
in reply to Thumper7

Much of the work in PARP inhbitors have come from Europe, including Germany and England. Look in to Nirparib as an option after platinum-therapy.

1 like
DrLin
DrLin
in reply to SBlau

Currently, I am at Massachusetts General Hospital, as Clinical Co-Director of Gynecologic Oncology.

1 like
Thumper7
Thumper7
in reply to SBlau

How can we hear or see this...? Thank you!

SBlau
SBlauAdministrator
in reply to Thumper7

Hi Thumper, This is a Q&A through the HealthUnlocked platform. Post your questions in this thread and Dr. Dizon will answer them.

1 like
DrLin
DrLin
in reply to SBlau

In September I will be leaving MGH and will be the Head of Women's Cancers at Lifespan Cancer Institute and the Director of Medical Oncology at Rhode Island Hospital in Providence, RI. I am excited to take on that as a new opportunity.

2 likes
GwenHP
GwenHP
in reply to DrLin

He also co-authored with Dee Spariacio "100 Questions and answers About Ovarian Cancer" which is in it's third edition.

4 likes
shyney
shyney
in reply to GwenHP

If anyone wants a copy of Dr Dizon's book - SHARE will send you one - just for those on this thread! Please PM me with your address.

5 likes
DrLin
DrLin
in reply to GwenHP

I am so proud of this book!

3 likes
DrLin
DrLin
in reply to SBlau

Happy to do this and to work with SHARE once more! Go ahead and ask me anything.

3 likes
SBlau
SBlauAdministrator

For women who do not carry hereditary mutations, do we know what causes primary peritoneal, ovarian and fallopian tube cancers?

DrLin
DrLin
in reply to SBlau

Most cases of epithelial ovarian cancers (which include primary peritoneal and fallopian tube) are still felt to be sporadic, which means not hereditary and otherwise, without a known cause. However, the field of genetics and cancers is ever expanding and we are learning there are other mutations that are associated with these tumors.

1 like
DrLin
DrLin
in reply to SBlau

At MGH, we are recommending REPEAT genetic counseling and testing if a woman was tested for a BRCA mutation >5 years ago, primarily because the field has advanced so much since then.

1 like
Rgtater63

Is there any other treatment than sx full hysterectomy with omentum when tumor cells are in the small bowel stomach and intestine for stage 3b lmp

SBlau
SBlauAdministrator
in reply to Rgtater63

Thanks for the question Rgtater63! We want to make sure these questions and answers to provide useful information to the entire community. Dr. Dizon, can you answer this in a general sense?

2 likes
DrLin
DrLin
in reply to Rgtater63

Surgery with the intent to remove all visible tumor is still the primary treatment. While medical therapy is important, we cannot treat this disease with curative intent without it.

1 like
miyoshi

Can you discuss some of the promising new drug therapies for patients with recurrence from serous carcinoma?

DrLin
DrLin
in reply to miyoshi

Sure! There are several such as mirvetuximab, which targets the Folate Receptor, and novel combinations, including immune checkpoint inhibitors plus another drug, whether it be chemotherapy, a PARP inhibitor or an angiogenesis inhibitor. In general, I think immunotherapy will only work in combination with something else. Sadly, we have yet to identified a mutation or target for a new drug, like they've been able to do in subsets of lung cancers.

1 like
bbee13
bbee13
in reply to DrLin

sorry can you explain what a PARP inhibitor is, I keep hearing that

DrLin
DrLin
in reply to bbee13

PARP inhibitors = Poly ADP Ribose polymerase inhbitors. We thought they were only relevant for tumors associated with mutations in BRCA, but with the approval of niraparib, it seems like these agents benefit women with a platinum-sensitive recurrent ovarian cancer...

2 likes
bbee13
bbee13
in reply to DrLin

Thank you!!!

1 like
GwenHP

A corollary to that question is what other mutations do we know give us a higher chance of developing ovarian cancer beyond what is known about the BRCA mutations.

1 like
DrLin
DrLin
in reply to GwenHP

Mutations involving BRIP1 and the mismatch repair genes are ones that also confer a higher risk (as examples)

bbee13

I am also wondering how can I tell my friends to talk to their doctors about ovarian cancer.... it seems so manydoctors are missing symptoms or assigning them to other problems but wen your doctor is just pushing you aside, how do you get them to listen

1 like
DrLin
DrLin
in reply to bbee13

I think the answer is be persistent- if you are not satisfied with your doctor's response, keep pushing. Clinicians are there to help you, not the other way around. Engagement means that both sides matter, and work together to help. So, if your friends (or you) are having symptoms, and your concerns aren't being met- assert your concerns. If it's truly about a fear it might be something like ovarian cancer, go so far as to ask for a CT scan (abdomen and pelvis).

3 likes
jel87hb
jel87hb
in reply to DrLin

Thank you for this encouragement. Why do you think it is that GPs are so quick to overlook ovarian cancer as a possibility? Even when a woman has a history of breast cancer? I know it is a rare disease but is there something in the way docs are educated (or perhaps NOT educated) about ovarian cancer that makes them discount it?

1 like
DrLin
DrLin
in reply to jel87hb

There is a saying in medicine: When you hear hooves, think horses (not zebras). Ovarian cancer is still a rare disease, and the symptoms are so nonspecific and are associated with much more common conditions (reflux, irritable bowel, endometriosis...)

But, these do not excuse doctors from not looking for ovarian cancer when there is even a hint of suspicion (on their part or on the woman's part). I think you have to think about the diagnosis to rule it out. In a busy medical practice, one tends to think of the common things seen every day, not the rarer things that might be so much more serious.

I encourage women to be very proactive in making sure their concerns are heard, and addressed.

4 likes
jel87hb
jel87hb
in reply to DrLin

That is true. I wish sometimes that ovarian cancer got more attention and recognition, because it seems that if we were all more attuned to it, fewer women would be diagnosed at the later stages. And it often seems like the onus is on the patient to push doctors to hear them. But doctors are busy people too, and it is a balancing act for everyone. Thank you!

1 like
DrLin
DrLin
in reply to jel87hb

You're welcome. I want women to be motivated enough to ask for scans, especially if they are worried.

Thumper7

Is it ever worth considering treatments in other countries like England and Germany, where new drugs may have already been approved Thank you so much!

DrLin
DrLin
in reply to Thumper7

That depends. In the US, access to clinical trials can be tricky, for non-US residents, especially if they are funded by the National Institutes of Health. Alternatively, access to treatments might be more available in Europe, but at a significant cost for those who live in the US. If you are thinking or looking at treatments outside of your home country, make sure to look at the evidence underlying them- talk to your personal docs about what you are looking in to, and get their take on the data (or lack thereof, as it might be).

3 likes
miyoshi

Can you tell us the benefits of HRD testing?

DrLin
DrLin
in reply to miyoshi

Well, HRD can only be tested in a tumor, so called genomic testing. This is very different from testing for a germline test using blood or saliva, called genetic testing. For PARP inhibitors, Rucaparib specifically can be used if there is a genetic mutation (blood or saliva) for a mutation in BRCA OR the tumor shows a mutation in BRCA (which can be seen even if there is no inherited BRCA mutation) or shows HRD. However, niraparib does not require testing for either a genetic or genomic mutation.

1 like
DrLin
DrLin
in reply to DrLin

I know this make much more sense now. lol

GwenHP

Several women in this group have been diagnosed with clear cell ovarian cancer and have read that this type of ovarian cancer may be less responsive to the standard chemotherapies. What makes clear cell different? Is current research being done to determine what therapies work best for the different ovarian cancer tumor types?

3 likes
DrLin
DrLin
in reply to GwenHP

Great question. I wish we knew why they were not more responsive than serous carcinomas. We do know these are less likely to be associated with mutations in BRCA and that when you look at the tumor's genome (genetic code) it resembles other clear cell cancers from other places, like the kidney. There is a very early hint that clear cell cancers of the ovary MIGHT be more responsive to immune checkpoint inhibitors. I am hoping to launch an industry sponsored trial looking at this specifically, and I am not alone in these kinds of efforts.

2 likes
miyoshi

Do you consider Rucaparib and Niraparib equally effective? Are the toxicity levels/tolerance the same for these PARP inhibitors?

1 like
DrLin
DrLin
in reply to miyoshi

Great question. We do not have head to head data, but they seem more similar than different.

GwenHP

When ovarian cancer has progressed to end-stage disease, what symptoms are usually present?

1 like
DrLin
DrLin
in reply to GwenHP

Women with end-stage disease often have severe issues with their abdomen: pain, profound constipation, severe bloating, persistent nausea. Shortness of breath is present in many patients as a result of fluid build up around the lungs (pleural effusions). Extreme fatigue is also present.

2 likes
missa13
missa13Administrator
in reply to DrLin

We had a question from a member earlier too wondering if Ascites is always present?

1 like
DrLin
DrLin
in reply to missa13

No, ascites is not always present, but it is in a large majority of patients- it doesn't signify end-stage disease either- it's common to see it at the time of an initial diagnosis!

3 likes
Rgtater63

Are ther any vitamins or supplements worth taking for women going through treatment

2 likes
DrLin
DrLin
in reply to Rgtater63

Just an MVI. I always tell patients to stay away from high dose vitamin treatments. It may (theoretically) interfere with cancer chemotherapy.

2 likes
missa13
missa13Administrator

A few women on here also had questions about specific nutrition or diets for ovarian cancer. Is there anything diet-wise that you recommend to your ovca patients across the board, or general tips?

1 like
DrLin
DrLin
in reply to missa13

It's really important to remember a woman is more than her ovarian cancer! I always advise a heart-healthy diet. Everything in moderation is fine. I do not advocate a starvation diet and also don't think it's necessary to stay away from sugar- a little cake will do you good. BUT, moderating intake is important. People sometimes think cancer will make you anorexic, but ask anyone who's done first-line chemo for ovarian cancer- it changes your metabolic rate and most end up gaining.

3 likes
Thumper7

It's my understanding that the TP53 genomic alteration is pretty characteristic of those of us facing this OC challenge... (for example,TP53 V272L). Are potential treatments recommended for that type of alteration, or supportive approaches to approach this in the near future? Thanks so much... :)

DrLin
DrLin
in reply to Thumper7

There is a trial looking at targeting p53 mutant ovarian cancers. So, maybe in the future!

1 like
Thumper7
Thumper7
in reply to DrLin

Yay!! Thank you, Dr. Dizon :)

GwenHP

What are the current thoughts on hormone replacement therapy in patients diagnosed with ovarian cancer - either in remission or treatment? What do you recommend for post-hysterectomy vaginal dryness?

1 like
DrLin
DrLin
in reply to GwenHP

In general, women who had surgery for ovarian cancer (meaning removal of ovaries and uterus at minimum) are candidates for oral estrogen therapy, so there is no contraindication in my eyes. If the issue is primary a vaginal issue, though, it might be as useful to use vaginal estrogen rather than oral estrogen. I think the main point: we do not believe (and there are no data) it has a negative impact on survival.

sheffly

I am interested in your research, Dr. Dizon. What are you working on currently that you're most excited about? And what research in the field of ovarian cancer do you think is the most promising?

DrLin
DrLin
in reply to sheffly

I am looking at immune mediated approaches for clear cell cancers (fingers crossed that my trial will proceed in the near future!).

3 likes
DrLin
DrLin
in reply to sheffly

I am also very interested in the survivorship experience after ovarian cancer, given the risks to women are so different from breast cancer. I think the needs of women with ovarian cancer may differ (a lot). So, I am doing some foundational work with Teresa Hagan (now at Pitt) and a postdoctoral fellow at MGH right now.

4 likes
DrLin
DrLin
in reply to sheffly

Trying to individualize our treatments is such a huge area! We are hoping to unlock subtypes based on genomics, but that is not yet in our reach.

miyoshi

When will clinical trials admit patients by cancer genomics instead of by organ of origin? I have serous carcinoma but started in the uterus (though the surgeon thought it could have started in the fallopian tubes) so I am ineligible for "ovarian cancer" clinical trials.

DrLin
DrLin
in reply to miyoshi

Great question. There are such "umbrella" trials looking at different groups of patients based on genomic findings, like the MATCH trial or ASCO's TAPUR study. a subgroup of uterine serous carcinomas also overexpress HER2, and there is a trial specifically enrolling these patients using HER2-directed therapy.

GwenHP

At what point do you bring up clinical trials with your patients? And do you encourage them to look up clinical trials that are on-going at other institutions? Does your facility have any resources that can help patients find clinical trials that match their situation regardless of whether or not a trial is being conducted at your institution?

DrLin
DrLin
in reply to GwenHP

The clinicaltrials.gov website is currently being redesigned, so I am hoping it will also be user friendly, including the potential to match. I have no issues referring patietns to other centers for a trial, if it is not open at MGH.

SBlau
SBlauAdministrator
in reply to GwenHP

SHARE has a clinical trial matching service that may be useful for folks to investigate: sharecancersupport.org/brea...

2 likes
Rgtater63

Thank you for your time and great information today. God bless

1 like
SBlau
SBlauAdministrator

This "Ask Me Anything" with Dr. Don Dizon is now closed. We have locked the thread, so that no more questions can be posted in the thread. However, we will keep the post on the community so that you can see all of the questions and answers.

Thank you Dr. Dizon for your time and energy answering these questions! Now you can give your typing fingers a rest. And thank you to all those who submitted questions! Still have questions? Consider starting a new post on HealthUnlocked to start a discussion among your peers.

If you would like a free copy of Dr. Dizon's book "100 Questions & Answers about Ovarian Cancer", please email your address to programs@sharecancersupport.org.

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