Sarcomatoid

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  • NanoSecond
    NanoSecond Member Posts: 653
    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

     

    Extremely impressive results

    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
    GSRon Member Posts: 1,303 Member

    Extremely impressive results

    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?

    Impressive indeed..!!
    Ron

    Impressive indeed..!!

    Ron

  • foxhd
    foxhd Member Posts: 3,181 Member
    GSRon said:

    Impressive indeed..!!
    Ron

    Impressive indeed..!!

    Ron

    Boy, I hope

    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.

  • Jeff2159
    Jeff2159 Member Posts: 108
    foxhd said:

    Boy, I hope

    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.

    How Time Flys

    I look back and last year at this time I was finishing my second week of radiation and chemo for my mouth cancer not realizing that for how crappy I was feeling, it was only going to get worse. July I started to feel human and I got off the feeding tube in Sept. I still cannot eat normal as I have to puree all foods and be careful when I drink liquids as swallowing is a problem due to effects of radiation and surgery. It has gotten better but pills are still a problem and that is why I have started avastin every 2 weeks rather than sutent. March 7,2011 left kidney/lymph node removed, sarcomatoid element 55% and at the end of April metasis of lung, buckshot pattern. 2 rounds of sutent 23 days each wiped most of the nodules away. Well the last 2 scans have shown a couple of the buggars starting to grow so Avastin was prescribed since I can't get sutent down at this time. No side effects with the Avastin but will find out first week of Jan with scans to see if it helps or not. Last 2 years these two cancers have taken turns trying to knock me down but all they have done is get me into fighting shape. Initially lost 115 lbs. but have gained 30 back and feel great. Only things I miss is a good steak and a glass of wine or beer. I had a small sip of red wine and it felt like acid as it burned my mouth and the taste was so concentrated. My taste buds are off the chart surprisingly, most others lose their taste. Also carbonated beverages burn my mouth too. Its like I have a babys mouth. In a ways I do as I have eaten gerbers meat jars as well as their oatmeal. Gotta do what you have to do. Everyone have a Merry Christmas and hope 2014 is better for all

    Jeff

  • fksamson18
    fksamson18 Member Posts: 1
    Is anybody out there?

    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!

     

     

     

     

  • penitent
    penitent Member Posts: 79
    edited December 2016 #127
    Sarcomatoid features

    My son-in-law has stage IV grade 4 RCC with extensive necrosis and 60% sarcomatoid features...so I would say that puts him in the small single digits of rarity.  He started on Votrient but the side effects were really tough and so he was moved to Opdivo.  At the first scan after that he had 40% reduction in the size of the lung mets...but now after a number of further infusions of Opdivo his last scans on 12/23 shows further metastasis in the chest (para tracheal).  Sarcomatoid aspects make it pretty darned aggressive and it can pop up anywhere.  Also, there is really no defined treatment protocols because it is so rare that it's kind of an 'orphan' condition.

    At least we know where his came from...a 13cm tumor on the left kidney...so having an undefined source is even tougher to peg treatment for, I would suspect.