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Dec 29, 2019 · Have you taken levetiracetam (Keppra)? in Epilepsy & Seizures

Placed on Keppra after ER > Inpatient in October: Seizure 1.5 hour involuntary muscle spasms.
(September 2019 had craniotomy and gamma knife to remove 3 melanoma metastases.)
1500 mg
Mood changes, depression, paranoia ramped up in about 3 weeks.
I am an optimist, big laugh …there was no laughing during this time.
Isolated to keep my unchecked filters from saying anything upsetting to others.
On a schedule that is slowly transitioning to another drug.
Noticed a difference right away.

Know there are other choices if you have issues.

Dec 29, 2019 · What is ground glass on a lung CT scan? in Lung Health

Diagnosed with pneumonitis (known side effect of Keytruda / Pembrolizumab)
After pulmonary function test, Mayo Rochester prescribed antibiotics.
Keytruda infusions have been stopped until “glass” in lungs clear.
Symptoms: Fatigue, shortness of breath, pain in chest

Oct 15, 2019 · Malignant melanoma in Cancer

Whew, that seems so long ago. Thank you for checking on me, Ginger.

Writing from Mesa Verse National Park, our resting spot after 10 days at ABQ Balloon Fiesta. Wasn’t sure if we would make it to NM after mobility issues from my 9/20 craniotomy.

9/20 Craniotomy to remove 3cm lesion, 98% removed.
Conservative as near language and motor skills.
9/25 Gamma Knife to tackle the other 2 spots and to radiate the cavity.
2.5 hours of radiation.

After surgery, went through steroid hell, slept 5 hours in 5 days. Once off Meds started sleeping in 2 hour pockets. Good, but not sufficient. Rosen, massages, acupuncture, all tried all helped, some. Think getting away has helped the most.

Determined to make it to ABQ. We missed last year (#5) due to mastectomy and I was not going to let melanoma take another trip from me. Left Minnesota after my immunotherapy appointments on 10/3. We drive, actually my wife drove, as I could not drive. Took a walking aid with a seat just to be sure I had a place to rest. Didn’t like taking it, but thankful that I did.

Graduated to quarterly PET and MRI scans, and I have decided on getting a port.
Head back to Rochester tomorrow….

Living life to the fullest!!

Barb

Sep 14, 2019 · 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

Aug 14, 2019 · 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. 😉

Aug 14, 2019 · 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.

Aug 14, 2019 · 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.

Aug 14, 2019 · 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.