Ridin' On with Rare Cancer

Follow Pat's journey to raise awareness about rare cancer. Ride #2 will be coming soon! #rarecancer #adenoidcysticcarcinoma check the website for details.

[Ridin' On with Rare Cancer @RidinRare]

One of my favorites....

[Ridin' On with Rare Cancer @RidinRare]

@CancerRoadTrip @LiveaMemory @Nicolette_O @DoroLef @travelcricket8 @sl2016_sl @RoadtripC @MadHattersNYC @LindaPeters64 @leisurelambie @brianmayroam @RoarLoudTravel @CharlesMcCool @epicureanexpats @59NationalParks @CourseCharted @Adventuringgal @SashaEats @LisaRivera2207 @JetsettersFlyin @miliman12photos @Abfabtravels @perthtravelers @southdakota @FitLifeTravel @naturetechfam @famTravelsUSA @HHLifestyleTrav @SDMagazine @HassaneTraveler @GalsWander @Frommers @ParksandPoints @NationalParkFdn The sunsets are great, but the best is when you visit when the moon is full and not a cloud in the sky. Lucky for me the Badlands are less than an hour drive from my house.

[Ridin' On with Rare Cancer @RidinRare]

@KeepCancrClassy I understand. Everyone's situation is different. I also go for treatment every 21 days. Its nearly 600 miles one way from my house to Mayo clinic. Its a 3 day trip, hotels, gas stations, rest areas, and all that goes with travel. I do my best to protect.

[Ridin' On with Rare Cancer @RidinRare]

@darienne56 @mssrfcali My cancer is called Adenoid Cystic Carcinoma.

[Ridin' On with Rare Cancer @RidinRare]

@mssrfcali No fluid in the lung thank goodness and hopefully my chemo and Immunotherapy help with things. I'm optimistic and I'll push on.

[Ridin' On with Rare Cancer @RidinRare]

@mssrfcali Not yet. I think I'll get a couple opinions before I do the pump. My pain is a combination of tumor growth in the lung next to the chest wall and side effects from radiation that I had to that area in September. Lots of nerve pain down my arm.

[Ridin' On with Rare Cancer @RidinRare]

@mssrfcali I just started my 2 drug infusions last Friday. A chemo drug called Pemetrexed and an Immunotherapy drug (Keytruda). Some side effects this week but not bad. I go every 21 days for infusion's. I'm so glad you and your team are optimistic and maybe caught this round early.

[Ridin' On with Rare Cancer @RidinRare]

@mssrfcali Sorry the scan did not turn out well Stephanie. Its such a punch in the face when we don't get the results we are hoping for. I pray the treatment goes well for you.

[Ridin' On with Rare Cancer @RidinRare]

@MinThomp I guess I'll be one of the only ones to say no thanks.

[Ridin' On with Rare Cancer @RidinRare]

@MarciaMarciaM12 Thanks! My oncologist has said that too. I'm not to worried about the Keytruda but the Chemo drug might be a different fight.

[Ridin' On with Rare Cancer @RidinRare]

This Friday I start my Chemo/Immunotherapy treatment. The chemo drug is #Pemetrexed and the Immunotherapy drug is #Keytruda. We are unsure whether Medicare will pay for this. To me that is scarier than the treatment. If they say no, it will obviously be a short set of treatments

[Ridin' On with Rare Cancer @RidinRare]

I completed my first Treatment of Keytruda and Pemetrexed on Friday. Feeling good with no side effects so far. Next Treatment just after Christmas.
Its supposed to be 60 degrees plus the next few days. Maybe I can get a bike ride in! RideOn!

[Ridin' On with Rare Cancer @RidinRare]

@ThanksCancer Wow! Just reading about all this shit kind of makes me glad that I have a rare cancer with no treatments available. The only time they use drugs are in the later stages. This Friday I start on Pemetrexed and Keytruda combo. Have no idea what to expect

[Ridin' On with Rare Cancer @RidinRare]

@umayrsufi @accrf_org I'll do injections every 21 days of a chemo drug named Pemetrexed along with Keytruda (Immunotherapy) Hopefully this will work. Thanks for following along and for your good wishes

[Ridin' On with Rare Cancer @RidinRare]

Well after 14 years of having cancer, (over 7 with metastasis to the lungs and lymph node's) I have to join those of you who have had Chemo. Adenoid Cystic Carcinoma usually is chemo resistant but I am out of options. I have lots of new mets in my liver and other area's

[Ridin' On with Rare Cancer @RidinRare]

@umayrsufi @accrf_org There is a new trial coming up that my oncologist wanted to get me in. Unfortunately it does not start for a few months. My cancer is really on the move so what we decided was to use the same drugs as the trial but my statistics won't be used in the study

[Ridin' On with Rare Cancer @RidinRare]

A spot on my pancreas, a mass in the soft tissue next to my ribs and a lot of growth in the lungs. All this and I still maintain a positive attitude and we'll be Ridin On soon.

[Ridin' On with Rare Cancer @RidinRare]

@mssrfcali So sorry to hear this news Stephanie. Fight on!

[Ridin' On with Rare Cancer @RidinRare]

@CrazyCancerLady @ElizAthertonSop We have lost our ability (and our rights) as a society to make jokes and for gods sakes laugh a little bit at the f'kd up world we live in. Suppressing my laughter is not good for my health.