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15 hours ago · Malignant melanoma in Cancer

Hi Joe.
Welcome to the group, glad you found us.
Good that others can assist in your questions as my journey starts with primary unknown. No indication on the skin of where it was, suspect the couple of blistering sunburns I had in the 70’s.

An aggressively growing lump in my breast was Melanoma. Mastectomy on September 2018. After the mass was removed (6cm) and identified, started Opdivo. Additional metastases (Mets) presented, Opdivo considered a fail for me. Moved to a Chemo+Keytruda combo, and had good results. My first clear scan came off chemo, remained on Keytruda. Second PET scan, body is clear, but they found 3 brain mets. Meet with neurosurgeon on Tuesday.

Be diligent, it is a nasty cancer!!

Good luck… Barb

Wed, Aug 14 6:19am · Talking Frankly about Living with Advanced Cancer in Cancer

Thank you for your words of encouragement. Being close to Mayo is helpful for sure, but stay tuned for the conversations around shoveling snow to get to those early morning appointments. 😉

Wed, Aug 14 6:16am · Talking Frankly about Living with Advanced Cancer in Cancer

Thanks Scott. Yes, I think I may have found a healthier place to socialize and voice frustrations… and help others.

Wed, Aug 14 6:09am · Facing Cancer Recurrence, PTSD & Acknowledging Mental Health in Cancer: Managing Symptoms

Powerful blog!!
I see myself in some of your journey, similar feelings, similar frustrations.
Not at your darkest, but definitely hissing at those closest to me. Great description, I will see a spitting cat for now on.

On the day we found out I had 5 new melanoma tumors, we upgraded the convertible. Had a good cry, then literally went and drove cars. Added more space, red interior. Several trips planned. Our love for music has us jumping states to see musicians we adore, and we are returning to the ABQ Balloon Fiesta in October.
Thank you for asking.

Wed, Aug 14 5:45am · Facing Cancer Recurrence, PTSD & Acknowledging Mental Health in Cancer: Managing Symptoms

Thank you for sharing your experience. I am very fortunate and realize there are so many people addressing much harder lives. But there are also many that have never been touched. I can see where it would be wiser to not look past the day at hand. Will have to think on that and see if it is something we can accomplish. Peace to you too.

Wed, Aug 14 5:33am · Facing Cancer Recurrence, PTSD & Acknowledging Mental Health in Cancer: Managing Symptoms

Thank you. Yes, I am creating a “new normal”, one that includes handling the treatment side effects. I was going with “living large between scans” now finding that I just want to make sure each day has something that will bring a smile and positive thought. There are many of those moments, every day.

Tue, Aug 13 8:33am · Facing Cancer Recurrence, PTSD & Acknowledging Mental Health in Cancer: Managing Symptoms

Hi. Gulp. I should be happy — wonderful wife who has taken care of me through 3 surgeries, held my hand through 11 months of every 3 week infusions, takes care of our beautiful home, and I was able to retire early (7/31). Received a clear PET scan in June and feeling well enough to road trip again. Our driveway is 10 minutes from the Mayo parking ramp. Hair is growing back from chemo treatments, little more gray, a little curlier. Large community of friends that have stayed with me through the 1 year journey. Good health insurance, and able to pay COBRA for both of us until Medicare.

But.. I am pissed and mad and cry every time I think of what my life was suppose to look like. Saved for retirement for 30 years, moved to an encore career to slowly move into retirement, looked at snow birding to a pickleball community, loved traveling in our convertible, boating, golfing, gardening, being outside. I was healthy, active, and ate right. Last time I was in a hospital was to deliver my 29 yo son. Used a tanning bed twice, in my 30’s. Did the usual tanning with baby oil in my teens.

It is not fair!! Is this PTSD?

Metastatic Melanoma wild type
Diagnosed 9\18
59 yo
Procedures: Mastectomy, lung VATS, lung cryoablation
Received my 1st clear PET in June after moving to a second line treatment of Chemo+Pembro
Next scan: 9/10

Tue, Aug 13 7:45am · Pembro-Taxol-Carbo Treatment for Bladder Cancer in Cancer

Hi. I have been on this combo after 6 months on a different immunotherapy (Nivo) failed. Had 4 treatments of the combo (every 3 weeks); was able to stop the chemo after a clear PET scan. Originally started the combo hoping to slow the growth of 5 tumors, so it was a very welcomed surprise. Battling Metastatic Melanoma, multiple lymph node sites. The plan is to continue on Pembro treatments until 4 clear PETs. 🤞

The first couple combo treatments were okay, had a low week, good week, then very good week. Tracked it so I would know what to expect each time. By the 4th treatment my blood counts were pretty low, and I was more and more fatigue. Today, 8 weeks out from stopping combo, I am doing good and almost back to feeling normal.

How is your grandmother doing?