derMaus Update from the Stage IV Club

MAbound

Don't blame you

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

Good decision.

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.

oldbeauty

Late to the dance but added best wishes!

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

 

derMaus

DKK said:

Good decision.

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.

It helps.

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

Armywife

I've missed a lot here

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.

linmk

derMaus said:

Thank you all

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

Don't Blame You

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.