Triple Negative Stage IV
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Xeloda didn’t work for me so I am going to Dana Farber in Boston to see what clinical trials they have.Sloan in New York has Immunotherapy xo40 with Keytruda for some.Kind I’d worried but trying to be hopeful.Kaayborg you give me strength.I am a teacher-6th grade and it has been tough lately.
Rhonda
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Dear Karina and other triple negative breast cancer ladies (especially you LOBULAR ladies), have you had genomic testing? Genomic testing involves sending your pathology to a special lab like Foundation One on the east coast or Caris Laboratory in Arizona. They go FAR deeper than just ER/PR/Her2 testing. They are looking for pathways to target the specifics of YOUR cancer. I have a very miraculous Stage 4 story to share of HOPE. Hang on to your hat, it will be good and I want the same for YOU!!
I received my first infusion of Opdivo as part of the" I-Predict" Clinical Trial approximately one year ago, on 2/13/17. Having failed 6 lines of therapy and subsequently referred for hospice care, I could never have imagined what a year of incredible healing was just around the corner! So many details aligned in perfect order to bring me here. I thank God for helping me find a path of healing and I hope it will set you on a path of healing, too.
While breast cancer affects 1 in 8 women today, I have learned that truly each cancer is unique. My case of lobular breast cancer does not fit the profile for most breast cancers. Only 5%-15% of breast cancers are lobular. The majority of lobular breast cancers express hormone receptors. Mine does not. While I do not know the exact percent of lobular breast cancers which are triple negative, a study of the pathology of 117 cases of lobular breast cancer determined that only 6.8% (8 cases) were triple negative. Furthermore, just 6%-18% of lobular breast cancers spread to the GI tract, as mine did. Were it not for the UCSD "I-Predict clinical trial" (this trial is open to ANY cancer and the principle investigator is Dr. Jason Sicklick), that created a custom treatment plan based on the genomic profile of my individual cancer, I would most likely have continued to fail the standard breast cancer treatment options available to me.
From the Foundation One report, the clinical trial noted I had a very high Tumor Mutation Burden (TMB) as well as a high PD-1 pathway. After a careful review of my case, they selected the drug, Opdivo, for my treatment. Unfortunately, Opdivo was denied by my insurance provider because immunotherapy is not standard of care for breast cancer. Thankfully, UCSD coordinated with the Bristol-Meyers Squibb Patient Assistance Foundation (BMSPAF) to obtain the drug on my behalf, free of charge. I cannot imagine any other therapy being more effective.
My response to Opdivo was immediate and dramatic. After just two infusions, my tumor markers dropped by 75% to 84%. By mid-June of 2017, all of my tumor markers were in the normal range. My first CT scan after 8 weeks in the trial suggested a potential complete response to therapy. A PET scan on 6/16/17 revealed that previously seen metabolically active retroperitoneal and midline pelvic lymph nodes no longer present. On 1/9/18 ileostomy take down surgery was performed and there was no evidence of disease.
While I have no way of knowing how my cancer will behave in the future, I feel incredibly blessed to be alive today. Sometimes I wake up long before daylight with the same excitement and joy a child feels on Christmas morning. Like the little child, I force myself to remain in bed until the first light of day. Then I jump out of bed confident that this new day will overflow with gifts - especially the priceless gift of more time with my husband and three children.
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Thank you so much for sharing your story, HealingHope! We hope you continue to respond well to the treatment!
The Mods
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Healing Hope-Thanks for telling your story! I spoke with my onc just yesterday about this testing. My next step is checking my insurance to see if they will pay for it.
RLK58-Keep us updated on going to Dana Farber. I am so sorry Xeloda didn't work for you. Praying you find something that will.
Yesterday was my onc appointment. I've had way too much liver progression in the last few months. I asked her if I don't have any treatment at all, how much time do I have? She said, three months until your liver fails. BAM right in the face. It was heartbreaking to see my daughter's face when my onc told us that. My word for 2016 was Intuition and I have connected with that inner voice. Her words didn't really surprise me. My word this year is Believe and I am working on it. Love you all so much. You are beyond supportive and informative and help me so much on this journey.
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kaylynne: thinking about you today with your onc appt. let us know what is decided
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Well the Xeloda stopped working for me, according to my last scan. I barely got 6 months out of it, which is a shame because at the current dose and 7/7 schedule it was quite tolerable. My oncologist wants me to look into SBRT on the bad lymph nodes in the mediastinum. That's the only place the cancer currently shows up. I'm all for it, but concerned because it's near my aorta and the stupid tumor is so big already, 4.8, that they may decline me. I won't know until I see the rads doctor on the 2nd.
I'm feeling pretty low. Got a ticket today for running a red light. It's been a week of bad news. I swore I'd hang in there until my sons graduation, which is the end of May. Pretty sure I'll make it. But it's starting to hit me that I probably won't see my other son graduate, which is another 5 years .
I'm going to Norway next week to see the Northern Lights, which has been on my bucket list. Right now I'm feeling too blah to be excited though.
Healing hope, do you have any more info on opdivo? Is is something I should ask my oncologist about if SBRT is shot down?
I've also heard of Keytruda being used for TN. Anyone have any info on this?
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hello all,
Everyone here brings such comfort and hope, your words and insight help keep Mom and I going, thank you! My mom has a 7mm malignant node in her lung, the node grew 5mm in 6.5 months. We are meeting with the medical team next week to discuss next steps and therapry. Everything I have researched suggests a pretty grim prognosis. She is 61 and was initially diagnosed with tnbc at 59. I wonder are there any women in their 60's fighting stage IV tnbc? I'm just not sure what to expect or what direction to turn. I want to be as informed as possible and am wondering if anyone has advice on how to help navigate my mom's care?
Thank you!
Katherine
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Dear Kay,
When I began the "I-Predict"Clinical trial at UCSD, my situation really was dire. Although I did not know "how long I had left" I felt that my time was running out. The fact that I was referred for hospice also suggests the same. I think God gives us all a very strong will to live. As long as there is a bit of fight in your heart, there is hope.
Our wonderful doctors are trained to make decisions on the basis of clinical research. Research involves lots of statistical data about huge numbers of people. But here's the deal: You are NOT a statistic. You are a human being who is unique from every other human being. Statistics do not factor in the power of the human spirit, the Holy spirit, prayer, faith in God, and the love of those who anchor you to this life. There are so many variables that make you distinct.
I pray you move forward with hope and prove this doctor was mistaken about Kay.
Regarding the question of "how long?", that is a question I personally do not choose to ask and really do not want shared with me UNLESS I ask, because I think it is in God's hands. That being said, many would prefer to know what their doctor thinks about their life span. I respect that position.
I meet every Thursday for an hour of prayer with a small group of ladies. May we pray for you?
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Healing Hope: Thank you for your encouraging words. Yes please pray for me. I will add you to my prayers as well
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Hi everyone,
I am looking at a trial with Eribulin and Keytruda.Treatment on day 1 and day 8.Anyone kmow anything about these drugs? Had a nice day in Boston.Went to the children’s museum with daughter and grandchildren and walked to the north end to Mikes Pastry’s .Beautiful day but I am exhausted.
Rhonda
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Dearest Minxie,
Please do not lose HOPE. I know you are terribly depleted physically and emotionally. Can you seek another opinion? Since my diagnosis in 2003, I have seen 12 different oncologists. Only about 5 actively treated me. Some were seen because I was seeking expert opinion and needed guidance as I stood at a treatment cross roads (I recommend Dr. John Link and Dr. Wade Smith, who have a breast cancer clinic in Orange, CA. Dr. John Link is the author of the book, The Breast Cancer Survival Manual, Fifth Edition: A Step-by-Step Guide for Women Newly Diagnosed with Breast Cancer). Other doctors, I saw briefly when I found myself "shopping" for a new oncologist. As patients, I think we have an inner sense when we are in the company of a doctor who believes he or she can help us, versus a doctor who does not think we will survive. Some of the doctors I consulted with did not convey hope. Therefore, I decided I did not want them on my medical team.
At one point I had the most loving, kind, compassionate, and caring doctor. It was hard to leave his care, but he simply could not help me any further. I was failing every treatment and needed something outside the box. I had heard about so many exciting advances in immunotherapy. I really wanted to try immunotherapy, but found it was not standard of care for breast cancer and only accessible to me as part of a clinical trial. Would you consider a clinical trial? I reached out to Dr. Wade Smith for guidance and also explored clinical trials at UCSD. I highly recommend looking at clinical trials in a university setting. Are there any medical universities near you? They will have more trials available to you than a tiny clinic close to home. In order to make the best decision about a clinical trial, you must have genomic testing of your most recent tumor tissue. Ideally, you will obtain a fresh sample from the most recent area the disease has progressed. Then, you need access to an oncologist who can interpret the findings of the genomic testing. This is where it can be beneficial to have a younger doctor who has been trained in this exploding field. Some clinical trials (Like the" I-Predict" trial I am in) offer free genomic testing as part of the clinical trial.
Please google: Foundation One Laboratory, Caris Laboratory, and OmniSeq. Each of these labs offers genomic testing and has a patient assistance foundation that makes it very affordable for most patients to pay a small fee out of pocket, if necessary. I have had each of these labs perform tests of my tissue samples and my insurance company denied payment for all three. To date, I have not received a bill from any of the labs (though I do expect a bill eventually). Do not let fear of a bill deter you. Reach out to the labs to find out how you can apply for assistance. As I have learned the hard way: The most expensive treatment is the one that does NOT work. Minxie, do you have a family member or friend who can do some of this leg work for you? One more thing: as you look into clinical trials, do not limit yourself to BREAST CANCER trials only. My trial is open to ANY cancer. If I had limited my search criteria to only BREAST CANCER, I never would have found this trial.
I did not think I would live to see my son graduate from primary school, and now he is one year away from graduating from college! I pray a pathway of healing open up that will give you the joy of participating in many family milestones and travels ahead. You are in my prayers.
Romans 15:3
May the God of HOPE (who gives endurance and encouragement) fill you with all joy and peace as you overflow with HOPE by the power of the Holy Spirit.
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Healing Hope - I've always felt the same way. It's in God's hands. (((hugs)))
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Hello friends old and new.
Healing Hope, thank you for sharing your incredible story. It really speaks to the need to get these promising trial drugs to patients as soon as possible. I am curious to know if you are brca positive.
kcan, with just 5mm of growth in 6.5 months, it seems your mom has Tnbc of the slower variety which is a blessing and should give much hope to try many effective treatments. Best wishes to you.
More to come but gonna submit before I lose this. Almost time to drive daughter home from oboe lesson.
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Rlk58, Keytruda/eribulin is a great trial. I would definitely go for it. At the right time all of us with Tnbc should take our shot at immunotherapy and chemo in combo is the best way to go for it. Immuno has the potential to give very durable response. I was able to get the Keytruda/eribulin combo off study and it kept me stable but right now I need more than stable. Tumors need reduced so I can live more comfortably so we've switched the game plan.
Minxie, it is so great to hear from you. So sorry you are feeling glum but so glad you shared honestly how you're feeling. I am right there with you often and take much comfort in knowing I am not alone. Please share how your trip goes. Northern lights...wow! I would love to be there with you.
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Hi Kaayborg,
Thank you for your kind reply. I was tested some years ago for brca and was found negative. I would like to pursue additional testing, but have not yet had a chance. Your mention of genetic testing and my prior mention of genomic testing prompted me to clarify the distinction between these two types of testing in case someone reading our post may confuse them (as I did when I first learned of them).
"Genetics is the study of heredity, or how the characteristics of living organisms are transmitted from one generation to the next via DNA, the substance that comprises genes, the basic unit of heredity. ... Genomics, in contrast, is the study of the entirety of an organism's genes – called the genome."
Genetic testing requires a blood sample and will help determine if your sons and daughters may be at risk of having inherited a gene abnormality for which you are a carrier. Genomic testing requires a tissue sample and will help determine if there is a genomic pathway to fight your cancer by blocking or stimulating a particular receptor.
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Kaylynne, I do hope Xeloda does great things for you. Make sure you have in mind what treatment you wish to try next. I always try to be one step ahead. Xeloda didn't work for me but that does not mean it won't for you. We quickly moved to eribulin after just a few weeks on Xeloda. My onc felt I should have noticed a quick response but I only got worse. Eribulin did give a quick response.
As for your onc and the 3 months, that doesn't actually mean much really. Just about all of us with aggressive liver mets and 3 months off treatment would find ourselves in liver failure. I actually count on this as somewhat of a blessing. When it comes time and treatment options have run out, I will not have to suffer long, nor string my loved ones along in such suffering either. You have many options to try yet. Praying great things for you.
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I'm not triple-negative, but I'm chiming in to agree with the timing of liver mets. My oncologist told me the same thing. Aggressive liver mets with no treatment can overtake you in about 3 months. With treatment, they really don't know how long we can last because there is such a variety of treatments available today. I agree with Kaayborg about the short final timeline being a kind of good thing.
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so my MRI results are in: states my tumors are stable and have not increased or decreased after 4 more cycles of carbo/gemzar.
What are your thoughts on this? I have not talked to my onc yet to see what she thinks. Is the carbo/gemzar not working any more or just keeping the cancer in check? I am disappointed the target tumors did not decrease since my TMs have decreased so dramatically.
Tricia
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kaayborg, Eribulin is next on the list. I am still waiting for the pharmacist to contact me about Xeloda. My oncologist refers it to the pharmacist and lets him take care of the insurance approval and deliverance of the meds. What were the indicators that Xeloda wasn't working for you? And you weren't on Eribulin for long and I see you have moved on to Gemzar?
If you have done the Foundation One or Caris testing, did your oncologist help you with that or were you on your own? My onc doesn't want anything to do with it. To me that means she doesn't feel like it's worth the time and money. I am not sure either. How can this help me at this point?
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Dear Kay,
On one occasion I reached out directly the the lab holding my pathology and gave them the tissue request form which was emailed to me by Caris Laboratory. It contained slide mounting instructions and details about how to ship my sample. On two other occasions, my oncologist coordinated with the laboratory to send my tissue sample for genomic testing. If your doctor will not do it, you may request it yourself for Caris and Foundation Medicine. I believe OmniSeq required a doctor request, but please confirm that from them.
You may wish to explain your situation and call each lab before deciding which to use:
Caris Laboratory: United States. Corporate Headquarters, Irving, Texas: Phone: 866.771.8946; Fax: 214.294.5690. Laborarory Operations, Phoenix, Arizona: Phone: 602.464.7500. Client Services: Physicians and healthcare staff. Phone: 888.979.8669 | Fax: 866.479.4925; Email: MIClientServices@carisls.com
Foundation One: Client Services. General. Phone. 888.988.3639. We are available Monday through Friday, 8 am to 8 pm Eastern Time. Fax. 617.418.2290. Email. client.services@foundationmedicine.com
OmniSeq: Please call us at 1-800-781-1259 or email us at support@omniseq.com. "Immune Report CardSM is a first-in-kind comprehensive immune profiling test designed to inform oncologists regarding checkpoint inhibitor (CPI) treatment decisions.This 5-test mode assay synthesizes and reports results for all FDA approved CPI companion diagnostics (PD-L1 immunohistochemistry and microsatellite instability) and widely published biomarkers, such as mutational burden and PD-L1/2 copy number variation. In addition, Immune Report CardSM uses next generation sequencing RNA-seq to quantify messenger RNA (mRNA) levels of 54 essential genes in the immune response cycle relative to a proprietary reference population."
Yesterday, I met with my clinical trial oncologist and we spoke about the challenges a patient faces when their doctor does not have a background in immunotherapy. Sadly, the patient is terribly disadvantaged when their doctor is simply not up to speed on how to interpret genomic test results. If you have a doctor who does not appear to embrace immunotherapy, please seek a consult with a doctor who DOES have such a background.
My wonderful and caring oncologist who monitored me before I became stage 4, had a very limited background in immunotherapy. His demanding case load did not afford him the time needed to properly invest in this area of study. Perhaps your oncologist could help you arrange for a second opinion with an immunotherapy specialist. If your oncologist broadly rejects this field of study, I would consider it a major RED flag. Some state "immunotherapy has not been proven to benefit breast cancer patients." I think that is a cop-out, as I have gone from being a hospice referred patient to a no-evidence-of-disease patient.
I am so grateful my oncologist referred me to the surgeon who happened to be the principle investigator on this UCSD clinical trial called "I-Predict" (https://clinicaltrials.gov/ct2/show/NCT02534675), that uses genomic testing to guide treatment decisions. If you have an HMO, you will need to obtain a referral and authorization for a second opinion (or pay out of pocket). If you have a PPO you should be able to see any specialist that is a preferred provider for your PPO insurance plan. The key is to take action or have a loved one take action on your behalf. I am so sorry we must fight so hard when our energy resources feel so limited. I am praying for a door open wide for you that will prolong your days.
Isaiah 41:10 – So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
I wrote in the following in the margin of my Bible on 7/12/04. "Please God destroy the cancer and sustain me. Please help me be strong and not be overcome by fear and despair of this disease."
Psalm 3:1-4 O Lord, how many are my foes (those ugly cancer cells)! How many rise up against me! Many are saying of me, "God will not deliver him." But you are a shield about me O Lord, my glorious One, who lifts up my head...I lie down and sleep; I wake again because the Lord sustains me. I will not fear the tens of thousands drawn up against me on every side. Arise of Lord! Deliver me, O my God!
A year ago when I was referred for hospice care, I trusted that God would bring healing -Either through medical treatment or through the doorway of death, that will usher me into the presence of God through my Savior, Jesus Christ. Until God takes away my will to "fight" I will leave no stone unturned to prolong my days. I will keep holding my torch of prayer for you and the rest of the ladies fighting cancer.
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Sorry to jump in here as I am not Stage IV, but HealingHope, I see that you are in the San Diego area. May I ask who your oncologist is? I just got Foundation One testing but I am not sure my onco will know what to do with the info. I am in San Diego too, so would love to hear who you saw.
Thanks,
Rebekah
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HealingHope, thank you so much for this information. I've reached out to a doctor in Dallas that I saw a few months ago. She is the one that originally suggested genomic testing. Although Dallas is 3.5 hours from here, it may be worthwhile to change oncologists.
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hartrish: From my point of view, no progression is good. When do you see your oncologist?
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Dear Rachel,
My UCSD oncologists is Dr. Kato. He specializes in GI cancers and is an oncologist for the "I Predict" clinical trial. Were it not for the clinical trial, I would very likely be assigned to the UCSD breast cancer department. If your insurance will allow you access to Dr. Kato, perhaps you could have a consult with him for the purpose of going over your Foundation One report. Another VERY GOOD option, would be to visit Dr. Wade Smith at a BreasLlink clinic. Breastlink has several clinic locations so perhaps you can find one closest to you. At most you will drive an hour for a consult. It would be well worth the drive.
I would also like to recommend a San Diego breast cancer support group. To read about the founder of this group, Lynn Flanagan, see: http://www.delmartimes.net/sddmt-breast-cancer-sur...
The majority of the ladies in this group are not stage 4. They meet monthly and also have a few excellent doctors (Like Dr. Wade Smith from Breast Link and surgeon Dr. Michele Carpenter, both from Orange/Orange County area) who visit the support group several times a year and take the time to speak individuall with members about their particular cancer case and answer questions.
I just sent Lynn Flanagan a text message about you and asked her recommendation for a local SD oncologist who could follow you. Blessings! Teresa
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Dear Kay,
I pray you have clear confidence about entrusting your care to a new doctor. Are you near MD Anderson? That is where my oncologist gained much of his immunotherapy education and experience before coming to UCSD.
This might be of interest to you:
https://www.mdanderson.org/publications/cancer-newsline/summer-2017/immunotherapy-breast-cancer.html
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Hartrish, stable is wonderful news. Don't even think about changing treatments unless side effects are unbearable for you. I had stable scans for nearly two years.
Kaylynne, I can't accurately list my tx in my signature. Couldn't find Keytruda ( or pembro ) or cisplatin to add with the gemzar. Eribulin
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Dear Kcan,
Triple negative breast cancer is quite different from other breast cancers. One of the most hopeful things is that triple negative breast cancer often responds well to immunotherapy. Please speak with your Mom's oncologist about genomic testing.
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kaylynne: saw my onc yesterday. Leaving me on current treatment. Even though target tumors they are watching stayed same size (stable), she said I have less diffuse cancer in my liver and the TMs are continuing to decrease with each treatment. Said as long as the tumors are stable will leave me on current treatment. Will switch if tumors increase or see rise in TMs since TMs have been a good trending measurement in my case. Three more cycles of carbo and Gemzar and then repeat MRI on April 10th unless TMs start to increase.
Kaayborg: thanks for the feedback. My side effects on carbo/gemzar are minimal so far. A little more nausea with each infusion but controllable with antiemetic meds. I do have some liver discomfort in front and back now. Onc not sure why since my cancer is less and she does not see any tumors pressing on my liver capsule. She is consulting with some of her other oncs to see if they have any other ideas. She prescribed a muscle relaxant that I will try although the liver is not a muscle so not sure it will work, but I will try to see if it will help. I had no liver pain at beginning of treatment.
I have some pretty bad back pain (bone and muscle) that we think is from the neulasta so will try taking Claritin one day prior and a week after administration. The pain gets better during my rest week. Ct chest is clean so no bone Mets seen.
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kaayborg: maybe notify the site web person to include in list. They need to keep the drugs updated. I wonder if they have immu132 or olaparib on the list
Actually: I just sent a message to the moderators about this. Will let you know there response
Response from moderators: they said they usually only add approved FDA drugs but she would take it to the board about adding clinical trials and drugs. Thought it was a good idea. She said for now you could free type the information into to signature profil
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Hello Ladies I just finished Xeloda July last year, I am triple negative, I did my exchange surgery November. I start having rashes around the implant, just found out my breast cancer spread trough the skin.I am devastated I had never heard about skin mets before. My oncologist is working on a treatment plan, I am not sure what kind of chemo he will put me on, he told me he is going to do Foundation one. What was your treatment plan and where is a good clinic to go?
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