Well Sh*t: Brain Mets from Lung ER+ / PALB2+

Options
Ashlyn
Ashlyn Member Posts: 141
edited December 2020 in Stage IV/Metastatic Breast Cancer ONLY

I figured I should just post once since I've been in several groups since my stage IV recurrence Summer 2017. Ibrance Group, lung group, Faslodex,Verzenio, All About Xeloda... some of you may recognize me even tho I haven't been the best at staying in contact

I've been really grateful to have followed along the experiences of others on and off the last few years all the way back to my initial stage 2 diagnosis in 2012 when I was 28 years old. The boards have been extremely helpful these near 9 years

I don't pop in often these days but wanted to just share my experience now since things have changed so much for me and I don't know how much more I will return. And of course I welcome any hope and insights from anyone else who has had to endure the shit storm or mets going to the brain. It makes me sad to think of the many woman we have already seen pass as a result of MBC here. I know I have options but I also know that my likelihood of outliving my disease beyondCOVID isn't looking great now. I'm angry and I'm devastated and sad that this pandemic is ruining even the end of life plans and bucket lists that so many people really deserve to experience

I was actually stable ish on and off these past three years since MBC hit in my lung and mediastinal area. But Capecitabine caused me live toxicity so I was off treatment for a whole 5 weeks in the Spring. During that time I noticed some head feelings. Dizzy. Equilibrium. Headaches in the Summer Got worse in August but they moved around a lot. Numbness in calves arm randomly a few times a week started me to really worry. I mentioned all this to my MO who thought it was maybe Capecitabine side effects which I was back on June to Sept. after a good June 9 scan Cape was working on my lung mets well so she thought my head would have been good too. I had had a good clear Nov 2019 head scan as well

Sept 9 cape was failing already on my two main lung spots and a new adrenal met. My airway compressing once again In the right lobe. Time for a trial. LYNPARZA + KEYTRUDA (a MERK trial) is up which I'm still in the queue for if I make it through what's next. Lynparza the PARP for the PALB2 mutation. Keytruda a bonus. I would be the first person in Canada in the trial. But it got on hold when my concerns and asks to CT my head in September had been skipped and my trial screen CT October 5 showed I had 5 lesions in my brain. 1-2cm in size Swelling. I have felt beside myself with my husband in devastation. Dexamethasone zone began 10 days ago. I am not myself. And not one to even post like this in one single post. But here I am. Insomnia land and fear.

mri was yesterday which I made it through. Ativan is back on the roster first time since ptsd in 2015. Today I'll find out how bad things are. My hope is for SRS and not WBR of course. I'm sad and scared and angry I didn't get the head CT sooner when I began mentioning symptoms. But it is what it is.

I also knew that PALB2 was a gene mutation that in studies has shown it goes to the brain. 😔

for now I'm mobile but I worry I've had small seizures. Today I'll have my brain radiation claustrophobic mask made and get radiation planning for both my brain and the two lung areas that have really only been my major issue since I recurred 5.5 years out from stage 2.

I'm nervous but will maybe pop into the brain mets group too for some hope and guidance once I grasp some air and acceptance. Always appreciate this space even though I don't write much. And know there's several of you who I've been in contact more so in DMs. I just didn't feel I could update that way and thought a post like this would be a better update Incase someone wonders if I just disappear which always makes me sad when members just “go" 😞 without knowing what happened

Grateful for the insights and research here always. The support and community, even tho I haven't been as active. Especially thankful to the latest research updates and posts that users like Cure-IOUs and others always does. Hopeful for things like CDK12 CDK7 and wild things like CRISPR for cancer care for all some day.

Still here but moving along again into new territory. Thanks for reading my late night Dex post in which I haven't slept more than 4 hours a night in nearly a week. 😑

hugs to all who I've been in contact these year. And thank you

Ash

· Share on FacebookShare on Twitter

Comments

  • Bestbird
    Bestbird Member Posts: 2,818
    edited October 2020

    Very sorry to hear about your progression/brain mets, and wanted to share that I know several people who've done well for more than 5 years (and a few more than 10!) with brain mets. Hoping that you respond beautifully to your treatment, and sending you good wishes!

    · Share on FacebookShare on Twitter
  • Ashlyn
    Ashlyn Member Posts: 141
    edited October 2020

    thank you for your message Bestbird. Appreciate it so much. It’s been such a scary time. Feels like next level as far as the MBC diagnosis goes

    I’m awaiting stereotactic rads now. And hopeful to make it to a trial.

    Thanks for sharing the long time survivals of it. 🙏🏻

    Ash

    · Share on FacebookShare on Twitter
  • moth
    moth Member Posts: 4,800
    edited October 2020

    Hi Ash, sorry that this is happening. It's full of suckage.


    Can you get sleeping pills to help for a bit? I only get dex once a week but I need zopiclone all the time now. The lack of sleep is just not good at all....

    Fingers crossed for a trial! Is it a rads trial or a systemic therapy?

    · Share on FacebookShare on Twitter
  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited October 2020

    Ashlyn,

    I’m so sorry to hear this. I can imagine how difficult it is to receive this news having recently gone through a scare myself due to massive headaches and nerve issues in my head/neck. In my case it’s the skull mets - I wish with all my heart that it had been similar news for you.

    I can attest to how much the Decadron messes a person up. While it was enormously helpful in reducing the brain swelling (at least at a higher dose - less so now that it has been tapered) I can’t wait to be off it. The insomnia is brutal. I also have not slept much for two weeks and yet her I am again, awake just a couple of hours after going to bed! I see my radiation oncologist tomorrow and hope she doesn’t want me to continue post rads as I just don’t think I can carry on with it. Hope you can get some relief.

    Sending a virtual hug to let you know you’re in my thoughts.

    · Share on FacebookShare on Twitter
  • GoldensRBest
    GoldensRBest Member Posts: 447
    edited October 2020

    Ash

    I’m fairly new here but just want to say HUGS back at you. If nothing else, the support here is like nothing else. You are in my prayers along with all cancer patients. This disease stinks....

    · Share on FacebookShare on Twitter
  • Lucia42
    Lucia42 Member Posts: 63
    edited October 2020

    sorry to hear about this new fork in the road Ash. I'm heartened by Bestbird's message and I'm hoping with you that the trial happens!


    · Share on FacebookShare on Twitter
  • Bestbird
    Bestbird Member Posts: 2,818
    edited October 2020

    Ashlyn, hoping you do beautifully on your next treatment and that the radiation gets rid of those pesky mets forever!

    · Share on FacebookShare on Twitter
  • theresa45
    theresa45 Member Posts: 314
    edited October 2020

    Ashlyn, I have a germline CHEK2 and FANCA mutations. I responded to a PARP inhibitor (Talzenna) for almost a year with minimal side effects. I'm also ER+/PR+ HER2-. A pre-trial screening brain MRI showed brain mets in March 2020, which was devastating. I had Cyberknife treatment (5 days) in April with minimal side effects. Brain MRIs since then have shown that the treated brain tumors are shrinking and there are no new tumors. I was told that hormone positive cancer and cancers with DNA repair mutations are particularly sensitive to radiation. Here's a quote from an article on PARP inhibitors:

    "Some patients with breast cancer who have germline and/or somatic mutations in other genes in the homologous recombination repair pathway may also respond well to PARP inhibition. In TBCRC 048, 8 of 11 participants with germline mutations in PALB2 had a significant response rate to olaparib."

    Hugs and very best wishes!!

    Theresa

    · Share on FacebookShare on Twitter
  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited October 2020

    Ashlyn, I just want to add on to Teresa's really helpful information: here from a Jan 2020 synopsis, they highlight benefits of platinum-based chemos and of course PARP inhibitors:

    SAN FRANCISCO -- Gemcitabine (Gemzar) plus cisplatin should be considered a standard for metastatic pancreatic cancer patients with germline BRCA or PALB2 mutations, experts here said.

    In a randomized phase II trial of 50 such patients, the combination yielded an overall response rate of 65.2% and a disease control rate of 78.3%. For patients also receiving the investigational PARP inhibitor veliparib, 74.1% responded and the disease control rate reached 100%, reported Eileen O'Reilly, MD, of Memorial Sloan Kettering Cancer Center in New York City.

    And in addition, for subsequent therapies, keep Trodelvy and Enhertu on your list, these are the Trop-2 or Her-2 directed ADCs, plus MGH is already up with a trial combining the Trodelvy with a PARP inhibitor. https://clinicaltrials.gov/ct2/show/NCT04039230 so this is a rapidly developing area.

    Sorry you have had such a hard time lately, hopefully you get this trial going and the cancer gets kicked to the curb...


    · Share on FacebookShare on Twitter
  • theresa45
    theresa45 Member Posts: 314
    edited October 2020

    Cure-ious, Thanks for the information! I was unaware of the new trial with Trodelvy and a PARP inhibitor. I looked it up and it appears (at least at the start) to be only for triple negative breast cancer. It would be wonderful if the PARP inhibitor combo trials could increase both the effectiveness and duration of response of the PARP inhibitors. I think that the challenge is finding a combination that doesn't have too much in the way of overlapping toxicities (particularly lowering blood counts). It makes sense to me that a targeted ADC would be an ideal partner, since it's typically not as hard on the blood counts as systemic chemotherapies.

    · Share on FacebookShare on Twitter
  • Ashlyn
    Ashlyn Member Posts: 141
    edited December 2020

    Thanks for all the responses to my October post. Appreciate the kind hearted comments, research and words of hope/support.

    Cure-ious: I have read the same! There was an update about PALB2 and Olaporib (Lynparza) November 6 that came out and it was looking so good!

    Theresa45: And yes to rads responses with ER+ and HRD cancers. As well as the PARP. Sounds like you experienced similar to me with the brain met timing! I am glad to hear you are doing well and that the MRI is showing response. Would love to keep in touch to see how you’re doing. Hopeful I will have a decent MRI mid-January.

    Since my post in October I have completed 5 stereotactic radiations, facing the claustrophobia that is those horrible face masks bolted to the table... I had another bronchoscopy biopsy which showed I am still 100% ER+ and HER2- negative... And did 8 rounds of radiation to my mediastinal / hilar lymph nodes which were compressing my airway as well as the largest lung tumor.

    I was on Dexamethasone for just shy of 2 months which caused me extreme manic behavior and insomnia. I was not myself at all and it was really challenging for everyone in my life. It did however serve me in that I was able to advocate for my needs, take zero crap from people causing stress and be honest with myself/everyone around me!

    Needless to say, the last few months have been a trip.

    Two good things:

    1. My last CT showed that the 8 brain spots are either 50% smaller in most cases or have resolved entirely. The lung spots all improved as well.
    2. I start a clinical trial for Lynparza and Keytruda this week (I am PALB2+). KEYLYNK-007 is the trial name for anyone interested. It is a fairly new trial in that no one at my clinic or anyone in Canada for that matter seems to have been enrolled. (It is not just for breast cancer. It is for homologous repair deficient cancers. So BRCA, PALB2, RAD51, BRIP, CDK12, BARD, CHEK2, ATM etc. And PDL-1 mutation is not required.) I will take Lynparza daily and Keytruda IV drip every 3 weeks. Keytruda crosses the BBB so I am hopeful it will keep the brain stable/behaving. That and the targeted stereotactic rads have me holding hope.

    Aside from the come-down off the steroids, I am doing OK... Headaches occasionally and noticing more wheezing which I am thinking is from maybe my airway re-opening again??? Withdrawal from the Dex has been actually pretty tough mood wise.

    If I am to remain stable in the brain and lungs... my tumor burden is actually really low. Nothing in my lungs really grew too much the last 3 months that I have been off treatment. Most little spots are 3-7mm anyway. My adrenal met was the only thing that increased in size. And my CA15-3 kept stable... 37 in October and September to 30 a few weeks ago. Which is NORMAL! I will take it and just hope that my brain stuff remains under control for a while.

    Thanks again for all who popped in with good words for me.

    Ash

    · Share on FacebookShare on Twitter

Categories