Rough day today

MarkDavid18 said:

Thank you all

Cancer won this round but I am going to win the fight. FU cancer!! My amazing doctor fast tracked me to THE oncologist for kidney cancer. I meet with him on Tuesday. I am so thankful for the prayers and support. These last few days have been very hard but no one ever said this was going to be easy. One day at a time. 

I love your attitude. You are going through a lot right now. Sending you strength and perseverance.

Cin

My pray is with you Mark, it is just too much to digest in a day (not easy to read it as well). I wish you the best outcome from your treatment!

Prayers for you.

Our stories sound very similar. I was diagnosed after an ER visit. Then March 8 I had my left kidney removed. My cancer had reached my renal vein. My surgeon was sure he removed all cancer and my pathology was clear. My pathology showed an agressive cancer. Two months later I ended up in the ER with severe back pain. My scans showed my cancer had spread to my lungs liver spine and groin. My cancer on my spine caused a compression fractue of my lumbar spine. I had an ablation and kyphoplasty of my lumbar spine. I had my first immunotherapy treatment almost 3 weeks ago. No maytma what stay positive and fight. My prayers are with you. 

oh Mark..  I can’t tell you how shocked I am

i was praying you would get better news

However as Stub says.. there are folk here for  many years

its very hard to absorb.. 

but strength and determination takes you a long way

prayers for you

Annie

Mark,

There is another cancer support site you might want to check out called Smart Patients -- excellent advice from many others who are currently going through treatment.  Very good information about your type of RCC -- https://www.smartpatients.com/conversations

You may also want to create an account with Practice Update (free) -- they just released this interview about rare kidney cancers with Ramaprasad Srinivasan MD, PhD 

https://www.practiceupdate.com/content/an-overview-of-rarer-subtypes-of-kidney-cancer/64185/11/10/3

Also in the future you may want to contact NIH about possible clinical trials -- https://www.cc.nih.gov/recruit/protocols/18_kidney.html --they cover much of the cost when someone participates and also do genetic profiling.

You are in my thoughts -- take care.

MarkDavid18 said:

Updates ...

Met with the Head of GU Oncology at Mayo Clinic yesterday.  This cancer is a real **** - aggressive and rare (unclassified with sarcomatoid features - grade 4).  They want to get me started on a dual immunotherapy of yervoy and opdivo but had to have a brain scan, blood work and another CT of my pelvis for staging/markers.  MRI was this morning and got good news - no signs of cancer in my brain!!!  I believe I will be getting my first infusion next week.  The doctors did share that this is not a curative approach but more a palliative approach to try to extend my life and improve quality of life.  This is a new first line approach to treatment and they really didn't have a lot of concrete information to give me.  I did get the very sobering news that people with this type of cancer typically live about a year.  I have decided that I have many more years to my life and I am going to fight like hell.  Keep the prayers, good thoughts and words of encouragement coming.  

I was given the same information agressive grade 4. I was given my first infusion of yervoy and opdivo almost 3 weeks ago. The biggest side effects for me were decreased appetite and fatigue. Today I have been feeling really good I've managed to keep up with my little ones and had a good appetite. My oncologist gave the grim info however she said everyone's body responds differently and even though we know there's no cure the growth can be stopped or it could shrink tumors. I have my second treatment Monday I'm hoping my side effects do not increase. I just reached out for a second opinion. I was very impressed with her. She also recommended genetic testing which my previous oncologist never mentioned. She spent almost an hour with me and my husband we felt more informed with her. Stay strong and prepare for battle my friend. I will pray for strength and healing for you. Like the others have said no mortal knows my expiration date. That's between me and God and so far he's put faith and hope in my heart. I hope your treatment goes well. I also had a port placed so my care team can complete infusions and pull blood for labs which has spared me needle sticks. 

We just went thru pretty much the same thing. My husband renal cancer showed because of a racing heart, then ct scan showed a tumor on his rib, which brought us to his kidney, which was removed the other day. Have no idea where we are headed next, but you and my husband are on the same path. So the fight begins. Positive  energy and good drugs.