derMaus Update from the Stage IV Club

It's so hard to know what to say when you know someone's heart has sunk a bit. I'm glad your doc is thinking outside of the box. 

Dear derMaus, I am sorry to hear this.  I agree with CQ on having a new onc, because as we all know - there are GOOD docs and NOT SO GOOD docs.  Prayers for all the warriors, and my heart hurts for you, my friend.  Hugs

Oh DerMaus, I am so sorry to hear this news of cancer spreading to new lymph nodes. But so glad that they are all retroperitoneal nodes . Remember you have immunotherapy in your back pocket which is shown to be effective for MSI-High tumors. Give your T-Cells a boost and they will handle the cancer cells!!! Why were you hoping to put off having immunotherapy a few months? From what I have read it does not sound like a therapy that is hard on the patient. Do you have some concerns? I really like your new oncologist. I cannot wait to hear all the great news from you two

I'm so sorry, my friend.  I was hoping for a better outcome - like complete remission!!  But, it sounds like your doctor is 100% on your side and willing to try something new.  At least once a week, some new study comes out linking immunotherapy with another cancer-fighting drug.  True, they're not all for uterine cancer but look how many times they've found something that works for more than one cancer.

Please let us know what they decide and how you're feeling.

Love,

Eldri

These Type-II-like cancers (shakes head). 

Hope your new onco can get rid of this beast for good ... finally.

I'm sorry. But that's great that your doctor thinks outside of the box!

The bad effects of the first immunology drug used on me have been very mild compared to the first chemo I had. It's too early in the clinical trial for me to say if the drugs I'm taking are or will be helping. It's a sequential drug trial with two different drugs. I don't think that you should be afraid of having immunotherapy especially since you have MSI and immunotherapy is supposed to work better on that than for those of us who are MSS. Take care. Please keep us updated.

My thoughts are with you through the next leg of your journey. Please keep us updated. You and the others are so inspiring.

hi DerMaus, I’m reletively new here.  Was diagnosed one  Year ago as stage 4.  (Large aggressive vaginal tumor, lung nodules,  involved lymph nodes) I had 6 rounds of carbo platin and taxol, which worked great the first three months then did almost nothing the last three. Since I wanted my uterus surgicallly removed as the primary site, and since chemo didn’t shrink everything enough to do it, I went on 6 weeks of photon radiation, plus 3 rounds of brachytherapy.  They wait 4-6 weeks and then scan you.  At that time, I got both great news and horrendous news.  The great news was that the radiation killed the vaginal and uterine tumor (to the extent that you can be sure of these things). The horrendous part was that the cancer had metastasized to my liver and I had at least 10 tumors there.  I started on a clinical trial of durvalumab in January but ended up being kicked out of the program just before I was to have round 2 in Feb. (Long and not good story there)

I went back to Mayo, and my doc set up a protocol of four rounds of chemo and immunotherapy (Pembro, a/k/a Keytruda) beginning in Feb.  i could only do one chemo for several months because my blood counts were so depressed.  But this past week was round 4, and I got the chemo plus the immunotherapy.  

Compared to chemo, immunotherapy is a walk in the park.  Fatigue is its primary side effect (for me, anyway) but it’s manageable.  I wish I had started immunotherapy Right after or during radiation.  

If you can -  please start immuno soon.  We are trying to shrink my liver tumors, two in particular, so that the immunotherapy has an easier time destroying the cancer cells.  It seems to make sense to start when the tumors are not really enlarged- it makes it easier to kill the cancer and  even the immune system needs a little help.