TNBC MBC Stage 4

@rlschaller Oh I love the Fall foliage! There is one tree in my neighborhood that's has fabulous colors. I will have to snap a pic once it's fully changed. How nice that the family was able to get together to celebrate. Happy New Year to you and your family may it bring you peace and joy.

Ok here been spending lots of time at my mil's as she continues to decline daily. Hospice eval tonight so hoping they can get her on service. Have to jump through the insurance hoops, fingers crossed.

@rlschaller Hi there,glad to hear you are enjoying your drug holiday. But thrilled to hear you have a plan in place that both docs agree on.Your MO's sound fabulous and very current on the treatments available. In a way I'm sure it can't come soon enough. We will be there with you each step of the way praying and cheering that this combo will get it done! So glad you are able to share your passion for mindfulness to your students and many others. You have a special gift to share. Enjoy those carbs, sounds delish!!

So yes, my mil entered hospice last Friday and we are very relieved. She got to see a couple last people on Saturday which included her first great-grandbaby! She was awake for the meeting and we even got a picture. She has now been unconscious the past two days and we are waiting for the angels to come. Thanks for checking in, all of you are always on my mind and in my heart❤️

Hi ladies it's been an exhausting week, my mil passed Thurs evening . Her children were able to be by her side and we gave her a peaceful sendoff. A weight has been lifted for sure and she is at peace. Will be another busy beginning to this week for services. Know that I continue to pray for all here daily. Hope you're enjoying your weekend❤️

@cookie54 Andrea oh my , hugs and my deepest sympathies. I’m glad she is at peace now, and with the angels. May her memory be a blessing ❤️❤️

@scgal08 so glad your scans were good. Yeah ! Im so sorry that trial closed without you, how disappointing . I understand the spots are limited in the early trials so it’s really the luck in the timing. . I hope she finds something else, meanwhile you’re hanging in there with Trodelvy which is great. I love your phrase “onward we go “ yes Indeed!

Well my plan changed so I should know more tomorrow about an early drug trial at MSK they matched me to, and / or Monday. It might open after a big meeting they are having tomorrow, to open to 3 more patients for phase 2… and so we’ll see… fingers crossed ! I did not go on the new chemo as we wait and see for this first. So not being on annything now for over three weeks the Mets have really grown. So, They decided to recommend radiation again as my Mets are rapidly progressing, and MSK has a special type of radiation my MO wants them to use. So that is the first step, and I see the radiation oncologist on Monday . I see my MsK mo tomorrow to talk about the trial. If that falls through, then they decided cytoxan and methotrexate will be the next line after radiation.

So much uncertainty… but they are trying for the best outcomes which I so appreciate. I’m getting closer to knowing what the plan is. I’ll keep you posted. ❤️ hugs to all.

@scgal08 @rlschaller Thank you for your kind words and condolences. May she rest in eternal peace.

@scgal08 Glad to hear your scan was pretty good but total bummer that you missed the trial, hugs. I can only imagine the disappointing feeling you must've had. I am remaining optimistic for you and Rhonda that will have an opportunity for an upcoming trial soon.

@rlschaller I'm sorry that your break is now longer than expected but I'm hoping it's worth the wait! Sounds like your team is really working diligently to attack these pesky mets. I hope you received some insight on things today and it helps relieve the anxiety of the delay. We will wait to hear from you and prayers up in the meantime. Hugs

@scgal08 Yes, I have my MO on Thursday the only appt I had to reschedule was Neuro Opthamologist . Thank God the eye has been fine since my appt is mid November. End of Oct and Nov is busy with appts and scans sometimes it seems to cluster together. MY mil lived in a 55 and over community in a mid size rancher so we are all working on cleanout. Blessed to be in a close family and we all pitch in. Sad times for sure as she was the last of our parents to pass. So we push forward and cherish all of our cherished memories. Any plans this week for you?

@scgal08 @cookie54 thinking of you and sending hugs.

Andrea - I love your comment about cherished memories! So true and in times of grief, so nice that you have a family effort in place. I remember when I cleaned out my mom’s apartment when she passed with my DH, Sister and her DH it was such a big job! And in a way cleansing and loving, But we did it together, and there was comfort and room for grief there, and in a way was quite healing. So glad you have a group effort going to help make clear of her ranch. Sending hugs for Thursday with your MO! And I hear you, a busy scans and appointments time! Glad your eye is ok. ❤️

Rita - glad Trodelvy is not a bother! Hope you have a smooth infusion this week. I know, it’s hard to remember sometimes the normal / non cancer appts as having import ! Lol… I hope your Mets are not causing you too much discomfort, and life is good. The fall weather here has been turning toward cold, is it the same for you? I love the cooler weather 🍂🍁

I saw the MSK radiation oncologist yesterday on Monday to see if proton radiation is an option, that is the new type of radiation my MSK mo thought might help. He spent an hour talking to me, about the pros and cons, and if at the end of the day he thinks external beam is the way to go, he thought I should go back to Northwell as they know me well .. amazing! He needs to review my past radiation treatments and will assess and recommend yes or no about proton and radiation. He stressed that radiation alleviates from a palliative perspective not curable perspective… and has side effects to consider and weigh for quality of life, though it was an option but complicated.

Perhaps do radiate some of the Mets that have not been radiated before, and not the ones that have..leave those for a clinical trial, or do partial radiation based on my discomfort. We also discussed that the chemo so far has not worked well yet, and he also thought a new drug trial might be best.. was a great talk! I left feeling heard and learned a lot about skin Mets. 1 - they are notoriously hard to treat ! 2- he sees what I’m going through often, that they go away and then reappear worse outside of the prior radiation field, and 3 - it can help but does not prevent them from popping up elsewhere worse then before. Oy vey ! So we’ll see. I see my Northwell Mo tomorrow, and see what she says, meanwhile had a PET and MRI and am awaiting the results. What a busy time, Andrea for you and me!

So that is my update. Much love to you all, and those reading along. The good news is, on this drug holiday I feel great and no more fatigue lol, will keep you posted ❤️🙏🍂🍃🥰

@rlschaller Thank heavens that your various oncologists are pulling together for you and have updated knowledge. And thank you for posting what you've found out about skin mets and the various radiation treatments to be had. Are yours bothersome at this point? Mine are occasionally itchy and I'm tired of looking at them!

Back a while my MO said that she wanted to leave the skin mets unradiated, as long as they weren't bothering me, because they were a good visual indicator of how I was doing. She often takes a photo for comparison's sake. I will ask her about the proton radiation, though that of course will be the purview of the RO, who I haven't seen in quite some time.

My MO also suggested an early drug trial. She said that being in one would be very intense, with many appointments, bloodwork, etc., so be forewarned! But I would jump at the chance.

It's definitely gotten colder around here, heading into the much-mentioned "sweater weather". 🧥🧤Love the heated blankets on offer at chemo.

I hope that your usual calm disposition is helping immensely in what is a jam-packed several days.

@cookie54 A clearing break is good for the soul! Do you think that the job will be done before you are into your busy time of scans and appointments? Much good luck to you as you see your MO tomorrow.

Hugs to all.

@scgal08 @cookie54 and all reading along.

Good morning. What a great fall day🍂🍃here, love sweater weather. Can’t type that without thinking of the SNL bit that Amy Poehler and Maya Randolph do …lol . Not to bring politics here, but am looking forward to NO KINGS March and gathering in NYC today, have a yellow turtleneck ready to go, a peaceful representation simply to say no to how things are going here, and yes to democracy and integrity , compassion and taking care of each other. Ok I’ve said my peace ❤️ so my voice is part of the change I’d like to see happen.

Well my worldwind of care continues. So proton radiation is not an option cause the area to radiate is to large, they recommend regular EBR so I see my Northwell RO on Monday. As soon as MSK decided not to go forward with proton , she texted me! I love my caring team. So I have a consult with her on Monday to see how they have spread and see if she can radiate some of them. 2 areas are in the old field so probably not, there are 4 others that are new.. I’ll keep you posted in my ongoing saga! And I’m now thankfully on a chemo regimen, CMF (Cyclophosphamide (Cytox), Methotrexate (MTX), and Fluorouracil (5-FU) intravenous infusion C + MF push - every 21 days. The Cytox I can continue during radiation, which is why they chose it. So many people involved in my care plan from 2 hospitals oy vey ! This is not typical I understand, however my Northwell MO is good friends with the MSK Mo and they have always referred and consulted on hard to figure out cases with eachother and teamed up since they she left MSK years ago. So I feel very fortunate. She was in private practice for years and Northwell bought her practice and her services, so she acts independently than the norms. I’m grateful.
I feel good, day 3 of a 21 day cycle, and life and love and light continue! ❤️❤️❤️❤️

Rita - so glad you are managing on the Trodelvy. Every time I switch off a chemo to ready my body for a new one, my Mets go crazy! Glad you do not have to go through that. Yes they are uncomfortable, but I have a cream that helps. I understand about grabbing at a clinical trial. Me too! I did not match to anything open, and the one I did , did not open after all . So I wait with you for something to try. And yes, lots of appointments I’m told but this chronic cancer journey is like a full time job, and a big part of my social life lol.. I figure it’s all one big support group meeting after another, it’s just fine. 😎

Andrea - Hope the clearing out of MIL ranch has been successfully completed, and you are sitting in your grief with comfort and restful peace of mind. All went well at MO appt? Hugs and hope so.

Hugs to all, happy Saturday. Rhonda

Hi all!

@rlschaller Thank goodness that you are on a chemo regimen now, as your skin mets take advantage of any break in the action. Looking after all the moving parts is like a full-time job, and you also have a job! How are you managing your much-loved teaching these days?

Like with your situation my skin mets are the focus of the moment, even though I have bone mets too, which are somewhat in the background at the moment. Of course they are being monitored, but the skin mets are so striking that they get much of the attention.

Oh for a clinical trial! We wait in hope.

@cookie54 Hope that you can take a deep breath and feel rested these days.

Hugs to all!

@cookie54 Hi Andrea! Thank you for your good wishes, as ever. The game (and your own suite too!) should be a welcome break from your recent difficulties. Enjoy.

@rlschaller Rhonda, hope that you are doing well on your new treatment.

It's a beautiful sunny day here, and a quiet weekend. The best kind.

@rlschaller Hi there Rhonda! Was happy to read your post to hear Keytruda is now in the plan. This is very encouraging news for more options going forward. In your pocket for starting rads Monday. Glad you’re enjoying the beautiful weather, yes crazy winds yesterday.

My Dexa results have improved ! Glad the Prolia and my calcium debacle was worth it. One less issue is a good thing!. Mil house going on the market Wednesday so life should start to settle a little

Rita hope your enjoying your weekend and feeling decent

ugh not looking forward to the time change 😔. Oh well just have to hunker down and hope it’s a quiet winter.

@scgal08 Rita so glad you can stay on Trodelvy for now . Seems like you are tolerating it well, which is so good. It’s not fun going off and waiting while everything grows. Are your Mets relatively stable for now? I hope so. Mine are so uncomfortable though getting better. The radiation should help, but it’s a harder patch to go through than I’ve done before.The cmf is going fine, I had one dose and then they added Keytruda for radiation, so once radiation is done next week, the next Infusion will be cmf and Keytruda. I can go back on Keytruda since it was 2 years ago that I had it, and now I have the gene it should effect. You can’t go back on something that you progressed on is my understanding. Insurance approved it, so onwards. ❤️
All is well but I am tired lol. I actually took these 2 weeks off from work .. so I can rest off of zoom for a bit. I was supposed to present at a conference next week, and have asked my co researcher handle it instead. I’m slowing down lol..probably a good thing while I stabilize this phase of my treatment. My body has been through so much, I am super grateful I feel good most of the time. But now I’m tired. My wbc is low though, had a Zarxio shot yesterday and will do blood work next week to see if it helped. Always something on this journey!

@cookie54 Andrea let me add my yeah for Dexa results to Rita’s! So glad for you. Fingers crossed your MIL house sells at a good price.

Turning cold here, have pulled out a blanket for the couch while I read. Enjoying it for now, though I know it will get old soon enough.

have a lovely evening all. Rhonda

@scgal08 @cookie54 and all who read along. Hi all, had the last radiation treatment today. Woo hoo. What an ordeal this time. My range of motion is not great on my right arm, and of course since the Mets are on my right arm, right side/ back they had to lift my arm and wedge it for treatment. Gosh.. not fun but I got through it by counting my breathe and visualizing the cancer cells being cleared away by dancing spirits. Lol.
And the Mets are better! The discomfort is mostly gone, they ooze just a tiny bit almost dried up completely, and some are totally gone already. I have high hopes they go away for at least a few months fingers crossed who knows maybe longer… I’m a dreamer 🙏❤️🥰

Hope all are doing well. Wishing you a calm mind and peaceful evening.