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derMaus Update from the Stage IV Club

derMaus's picture
derMaus
Posts: 559
Joined: Nov 2016

I got my PET scan results today and, while not catastrophic, they certainly weren't what I was hoping for. Last year I developed mets to the retroperitoneal lymph nodes which were diminished, but not eliminated, by external radiation. In January I had had 5 rounds CyberKnife stereotactic radiation which seemed to have worked on the original problem, HOWEVER a bunch of new lymph nodes grew while that was going on. That's the bad news. The (nominally) good news is that it hasn't spread anywhere else, it's staying in the retroperitoneal nodes but, regrettably, expanding. 

My new oncologist has put me on Arimidex (aromatase inhibitor) and is exploring more CyberKnife for the new growth. He also noted that, since I'm now Stage IV with 'systemic' disease, he wants to take a "more proactive" approach and start me on immunotherapy soon. I was hoping to put that off for a few months but given the size and speed of the new growth I don't believe that will be an option. He also mentioned a couple of new drugs to possibly combine w/the immunotherapy, so at least he's thinking outside the box. More shall be revealed...

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

You've been riding herd on those retroperitoneal lymph nodes, you'd think they'd start getting their act together.

How do you feel about immunotherapy?

Jairoldi's picture
Jairoldi
Posts: 204
Joined: May 2017

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. 

CheeseQueen57's picture
CheeseQueen57
Posts: 802
Joined: Feb 2016

Glad your new oncologist is being aggressive. My oncologist admitted in my appointment this week that she operates on a real “evidence based “ basis.  The time for that for me was a couple years ago. If things get worse, I may be going elsewhere too because advanced cancer doesn’t care about “evidence based”. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2582
Joined: Mar 2013

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

MrsBerry
Posts: 102
Joined: Dec 2017

DerMaus, I am sorry to hear this news. Please know you are in my thoughts and I hold you in the light, along with all the strong and compassionate ladies here. 

SF73
Posts: 261
Joined: Oct 2017

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 :)

 

MugsBugs
Posts: 105
Joined: Jan 2018

DerMaus - that sucks!  I wish there was a way to beat those cancer cells into submission and show them who the boss is!  Your doctor sounds awesome and hopefully between the two of you, you can kick the cancer to the curb!

I will be praying and sending positive thoughts for you!

EZLiving66's picture
EZLiving66
Posts: 1343
Joined: Oct 2015

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

cmb's picture
cmb
Posts: 358
Joined: Jan 2018

I'm keeping my fingers crossed that your new doctor and his different strategy brings you better results than you've had before.

evolo58
Posts: 293
Joined: Dec 2017

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

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

Donna Faye's picture
Donna Faye
Posts: 239
Joined: Jan 2017

Not what we want to hear for sure. Know you are in my thougts and I will follow how things go and am hoping the new treatment works wonders!!! Hang in there.

barnyardgal
Posts: 210
Joined: Oct 2017

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

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1531
Joined: Jun 2015

derMaus, So sorry to hear this news but thanks very much for sharing it with us. We all are stronger together and you are in my thoughts and prayers. I'm so glad you have a great doctor to work with. With so many new treatments becoming available, maybe, just maybe.... you can still hit NED. 

 

CQ, I have been thinking about you too. Please get another doctor. You need someone that is open to alternatives! 

Love and Hugs to you both.

Cindi

 

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

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.

derMaus's picture
derMaus
Posts: 559
Joined: Nov 2016

Thanks, linmk. It's always good to hear from those who are actually doing immunotherapy and I'm glad yours is well tolerated. 

Wannabeatit
Posts: 97
Joined: Dec 2017

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

Wannabeatit
Posts: 97
Joined: Dec 2017

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

DKK
Posts: 8
Joined: Oct 2017

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. 

Northwoodsgirl
Posts: 527
Joined: Oct 2009

I am so sorry to hear of your “systemic” disease....  The immunotherapy sounds like something that is possible. Just want you to know that I am keeping you in my prayers. Glad you found a new oncologist. 

Lori 

derMaus's picture
derMaus
Posts: 559
Joined: Nov 2016

Thank you all for the kind words and support. Where would I be without you? My concern about immunotherapy is that there's no end point in sight; I'll be on it "indefinitely" per the oncologist and, honestly, I'm just tired right now. I was diagnosed in November 2016 and have been in treatment of some type ever since. I've tolerated everything well, so I feel badly even saying that given how much many of our members have had bad experiences. I'm just exhausted and discouraged right now.

After much thought, and reading the PET report closely (it was worse the second time around), I left a message for my onc that I was willing to start immunotherapy after I get back from a family wedding in late May. Hopefully the Arimidex will ride herd until then. Thanks again for your support and I'll keep you posted. Bless you all. B

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

For waiting. Like you I was sick and tired of the cancer treatments. I waited about five weeks before I began the immunotherapy clinical trial. I had just been released from the hospital after three days due to the pulmonary embolism. The gynoncologist wanted to start me immediately on a new weekly chemo combo. I didn't like the idea of going to Houston weekly for a new chemo combo that may or may not have worked. That was before I was accepted into the immunotherapy clinical trial. I also was mad at myself for not getting off the chemo gemzar/cisplatin combo a month before when I knew it wasn't working.  I enjoyed my five weeks off. I planted a garden and took care of some personal business. I hope that you enjoy your time off too.

MAbound
Posts: 858
Joined: Jun 2016

It hurts my heart to hear your discouragement when it seems like you are always otherwise so  positive and informative for the rest of us. You got a really raw deal with your first round of treatment, so it's understandable and maybe even healthy to feel like your feeling now. We do our best to keep going despite the daily physical and emotional assaults on us, but sometimes you just have to take some time to let it get to you in order to keep going on afterwards. Don't feel bad or guilty about it. You've earned the right to feel how you feel after all you've already been through. The roller coaster will head back upwards in a while, so just do what you need to do before getting back on. Prayers and hugs.

 

DKK
Posts: 8
Joined: Oct 2017

This sure is tough isn’t it everyone?  we’ve all had such ups and downs and it really gets tiring. Weve earned the right to be tired! and sick of treatments and hospitals and doctors, God bless them.

Der Maus- I so get the exhaustion and discouragemenT.  But please note- if immuno works, it’s a total game changer.  and it often works on people who are not the best candidates for it.  I am personally happy for you that you are going forward with it.  

I was told they didn’t know how long they’d be giving it to me if it works.   And the docs also tell me there are so many anticancer drugs and targeted therapies coming out so often they can’t keep up.  So this may not be given forever, and there are new therapies coming out every day that could take you out of getting the meds indefinitely. I don’t know if this helps but perspective helps me , and I just believe there are good things ahead for you.

derMaus's picture
derMaus
Posts: 559
Joined: Nov 2016

It helps. Perspective is everything and I'm short of it right now, so thank you. B

oldbeauty
Posts: 190
Joined: May 2012

DerMaus, so, so sorry to see that you are beset with more lymph node activity.  On the bright side, you were aggressive in your own behalf and got your genetic testing done so now your new doctor, who wants to be on the offense, can tailor a treatment, including immunotherapy.  I went to a talk a few weeks ago and heard from two doctors, clinical medical oncologists who also are researchers in gyn cancers.  Each of them was very enthusiastic about the promise of immunotherapy.  I think one of them was deeply involved in clinical studies with Keytruda.  I went up to him afterwards and he spoke of immunotherapy as being a game-changer, permitting even the talk of "cure" in the right circumstances.

[Sidebar:  From him, I learned that old tissue slides can still be used to stain for new markers like "mis-match DNA repair deficiency."  So I am in the process of retrieving the only slides of mine that still exist...overseas.  My original pathology slides were destroyed in the normal course of business (after 10 years).  Note to those interested, the lab manager at my original treating hospital told me there is no special care needed in maintaining slides, so I would urge all of our long-time survivors to think about taking custody of their pathology slides before it's too late.]

derMaus, I understand the weariness of repeatedly being referred for treatment.  I know you will summon the stamina and energy to confront the beast anew.  Good on you for taking a time out for some fun before answering the bell for your new round.  Best wishes, Oldbeauty

 

Armywife's picture
Armywife
Posts: 294
Joined: Feb 2018

Been gone for a month and am just now reading this.  You are brave and smart, derMaus - and blessedly well-informed.  You're an inspiration to all, and I hope the next round of treatment exceeds expectations.  Hugs to you.

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