Merkel Cell Cancer

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Merkel Cell Cancer

by Rhondared on Tue Apr 10, 2018 02:37 AM

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Husband has just been diagnosed with Merkel Cell Cancer. MRI at Emory in Atlanta tomorrow. PET scan and CT scan already done. Cancer is in lymph nodes and parotid gland. I know this is a very rare, aggressive, malignant skin cancer. Is anyone on here dealing with this and if so what treatment protocol are you using? Surgery, radiation, immunotherapy, all of the above? Hoping for some success stories to cheer him up. Just finished reading the caregiver section so that I can better help him. Thanks!

RE: Merkel Cell Cancer

by Chucksan on Tue Apr 10, 2018 10:38 AM

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The new immunolgy type cancer drugs are showing signficant postive responses in treating serious skin cancer such as Melanoma and the rather rare Merkel Cell Carcinoma.  One of these drugs, Opdivo, has my wife in 17 months of remission after 52 months of stage 4 lung cancer.  Opdivo and Keytruda plus Avelumab (Bavencio) are having some impressive results.  Hopefully you are seeing an oncologist who specializes in skin cancers like melanoma and MCC at Emory's Winship Cancer Institute.

https://winshipcancer.emory.edu/patient-care/cancer-types/me

https://www.merkelcell.org/treatment/immunotherapy/

Please know there is hope and your husband is at an excellent cancer tratment center.

All The Best!

Chuck 


 

RE: Merkel Cell Cancer

by Rhondared on Tue Apr 10, 2018 03:42 PM

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Thank you so much Chuck! Yes, he is being treated at Emory’s Winship Cancer Center by oncologist Dr. Kudchadkar who specializes in MCC. She is actually the one running the clinical trial using Opdivo. We are trying to decide on participating in that trial versus bavencio. Not much out there on bavencio side effects and patient reviews on it. Lots of info on Keytruda from patient reviews. All are tier 3 under our BC/BS plan. Thanks

RE: Merkel Cell Cancer

by Leyamichelle on Thu Apr 12, 2018 06:07 PM

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My brother in law had merkel cell on his bottom lip. He had treatment at MD Anderson & did great for probably 7 years until he developed pancreas cancer. The doctors at MD Anderson said the 2 were not related. Good luck to your husband.

RE: Merkel Cell Cancer

by Rhondared on Tue Apr 24, 2018 09:48 PM

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Today was trip to Emory for infusion with first dose of keytruda as well as bloodwork from lab. Husband and I met with oncologist also who went over MRI scans. Husband has had no side effects thus far from keytruda and BC/BS has been great on covering the drug treatment. It is Tier 3 so it costs fifty dollar copay. Also we were free to leave as soon as i.v. was completed instead of having to wait and be under observation for an hour like some of the others who were being given other drugs. Evidently there are less chance of side effects according to the pharmacy rep who stopped by to answer questions during the process. If surgery is needed after this series it will be done in August after another MRI. Hoping this miracle drug works and negates the need for surgery and radiation.

RE: Merkel Cell Cancer

by Rhondared on Thu May 17, 2018 07:52 PM

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Husband had second dose of keytruda this week at Emory Winship Cancer Center. No side effects thus far. He talked with another patient who had lung cancer and said she had been on keytruda for 2 years. Husband will not have another MRI for a couple months but said that he can feel the bumps (nodes) have gotten smaller.

RE: Merkel Cell Cancer

by Chucksan on Fri May 18, 2018 12:25 AM

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Very good news so far!  Some on Keyruda have relatively mild side effects, quite often some fatigue the day after infusion.  I know of several who have experienced some skin irritations but can usually be controlled with pre-meds before the infusion.  However, almost all patients experience much fewer side effects than the alternatives of chemo or other treatments.  Let's hope the future MRI shows good response to the Keyruda.  

All the best to you and your husband and keep us informed.

Chuck

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