Sarcomatoid

NanaLou said:

Updated on my journey

I am updating this thread. One to give new comers hope who have sarcomatoid features. Two because Tex ask me to several months back. below is my story.

 

Nephrectomy November 18,2011
11 Cm , 95% sarcomatoid, T2b, staging III (The majority of the primary renal cell carcinoma and the metastases have rhabdoid features, although focally the primary carcinoma has conventional clear cell features.)
reoccurence January 21,2012 several lymph nodes
shurnk 50% April 6,2012

stable July 2012

First rounds of HDIL2 September/October 2012

December 2012 very small shrinkage.

Second rounds of HDIL2 January 2013.

April 2013 only two spots remain both 8mm. (Not even big enough to be considered cancer)

April 2013 Third and final rounds of HDIL2.

July scans show no changes. Oncologist says I have a complete response.

October scans stable one spot may have deminished a little. No significant interval change when compared to prior study. No finding to suggest malignancy.

I get to wait until February to have more scans. Hopefully we keep going in this direction and stay stable.

Good Helth to all,

NanaLou

 

I must say it is extremely impressive to read just how well you have responded to HD IL-2 - considering that most non-clear cell pathologies generally do not respond to it at all.

Have you been doing anything else to help insure such a marvelous outcome?

GSRon said:

Impressive indeed..!!
Ron

Impressive indeed..!!

Ron

to join you Nana. I could never have tolerated that many treatments. Mentally yes. But my poor body was saying, "Absolutely not!" It is very exciting to read your post.

Hoping and praying I can find others in a similar situation who are as lost as we are.

In May of 2015, everything was fine. GREAT, even!  In June of 2015, my husband started complaining of pain in his left hip.  In July of 2015, my husband started limping.  He had been to the doctor's office several times, but could only ever get in to see the Physician’s Assistant.  I encouraged him to go see an Orthopedist.  "They didn’t see anything on the Xray and they ordered Physical Therapy.  They think it has to do with my Sciatic nerve.  It should be ok.”  He went for PT, no improvement – in fact, it was getting worse.

In August, he started using crutches to get around.  Finally, in September, when the pain was unbearable, I was able to convince him to see the Orthopedist.  Within seconds of looking at the X-ray, the doctor saw the outline of a tumor and ordered an MRI.  At the time of the MRI, my husband rather casually declined to wait as the radiologist was frantically trying to get in touch with the ordering doctor.  “I have an appointment tomorrow.  No hurry.”  I knew this meant bad news, but I guess he wasn’t ready to hear it yet.

We met with the doctor the following day, he confirmed it was a tumor, recommended surgery to fortify the hip/leg and he sent us directly to a nearby cancer center.  The oncologist, although quite capable, should really work on her bedside manner.  Without anything more than the MRI and blood test results (no PSA test), she kept wavering between multiple myeloma and prostate cancer and finally blurted out without any regard for our feelings that it was Stage 4 prostate cancer.  WRONG!

The PSA turned out to be negative and the doctor ordered a PET scan.The PET scan revealed that the cancer was not only in his left hip and thigh, but in his right hip and thigh, his back, his ribs and even his forehead.  

After several second opinions, we found an Orthopedic Oncologist we felt compfortable with and who was certain it was multiple myeloma.  Surgery was scheduled, and after a series of mishaps which maybe I'll save for another post, he finally had his hip replacement surgery and the doctor was able to get a biopsy. 

In November, 2015, my husband was diagnosed with Stage 4 Metastatic Sarcomatoid Carcinoma of Unknown Primary Origin. 

Wait - WHAT?!  So it's not sarcoma, it's not carcinoma, AND they don't even know where the cancer originated?  "You are in the 1% of the 1%" we were told. 

While my husband recovered from his surgery, the doctors consulted to determine the best course of treatment.  They decided to treat it like a sarcoma.  The treatment plan, we were told,  is "indefinite". 

They started with Gemcetabine/Docetaxal which stopped working after 10 months.  After some radiation to the left hip, they started Doxil.  The chemo will be briefly interrupted as they have determined they now need to radiate the right hip, and then I believe the plan is back to Doxil.

My question is...has anyone here had a similar experience/diagnosis?  What has/has not worked for you?  Have you tried alternative treatments? Any guidance you could give us would be helpful.  I know we have a long road ahead, but it might provide some comfort if we knew that there were some other "One Percenters" out there.

Thank you!