Triple Negative Stage IV
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@rlschaller Rhonda It was great to meet you via zoom also! I truly enjoyed it and it would be great to meet up monthly. Will be thinking of you tomorrow as you zap out these pesky skin mets once and for all!❌⭕️
@gaurykris Great news that your mom is eating better as she starts chemo. Food is medicine and the better she prepares her body the better off she will be to endure it. Yes, please keep us posted.
@scgal08 Hope you're feeling ok and are enjoying the weekend.
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@rlschaller Thinking of you hope radiation is going smoothly and SE are tolerable.
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@cookie54 thank you ! It’s been a whirlwind wk. I actually had the dry run this week, and first radiation session is tomorrow. We start on the back lesion, and next week on Wednesday add the axilla and shoulder. I’m actually excited, it worked so well the first time. 15 fractions and then we see. My MO actually said yesterday when I saw her, that the skin Mets are not life threatening, but they can spread and we need to contain them. And we need to find a cancer drug to make sure the metastatic cells lay dormant for as long as possible. She is considering a few options and there is also a clinal trial at MSK , so we’ll see what the team recommends.
Other than that life is good. Work is crazy busy this time of the semester, and I’m running a weekend workshop which will be fun. I love my zoom life lol. How are you doing?
Hugs to all ❤️
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@rlschaller Ok gotcha, Fingers crossed that it is successful to get rid of skin mets forever. Also glad to hear it's not life threatening but you can certainly do without it! Well you are in excellent hands and I know they will come up with the best possible plan.It's great that you feel well enough to teach and enjoy your everyday life. I love and admire your spirit!
I'm doing good, thanks. I was at MO today for my monthly port draw and office visit. We agreed we will scan again the end of May. I usually scan every 3 months and she feels it's ok to start spacing them apart a little more. My last scan was January 2nd and I don't feel comfortable will a full 6 month span. So we'll see how this one looks and go from there. One thing I have learned in Stage IV is to try to take it one day at a time.
Have a restful evening and in your pocket for rads tomorrow.
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@rlschaller Wishing you all the best as you start your radiation treatments tomorrow. At least you have done radiation before and it is a familiar regimen.
It would be interesting to hear what options your MO is considering for future use.
I saw my MO today and she said that she sees a lot of skin mets/skin abnormalities. Interesting, as I hadn't encountered anyone else who has it. So many manifestations of BC!
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Hi Gals there is an update so mom chemo was nab paclitaxel and carboplatin till 1 dose she was doing ok liver values and blood counts okay so afterchemo next 4 days she was ok 5thday develop.some infection got admitted being treated with antibiotics had fever and shivering now it is settled but still.admitted connect chem may be delayed.was scared past few days .
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@gaurykris Sorry to hear your mom is hospitalized. Seems as though the infection was caught quickly so hopefully she will start to feel better once meds kick in. One day at a time , if chemo is delayed it's ok as she needs her body to be healed to handle it. Sending strength and healing vibes your way.💕
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@scgal08 have you decided on a chemo drug to try next ? I forgot where we left off on your treatment plan lol… interesting your MO sees more Skin Mets these days. Actually , you are the first person I’ve met who has it too and or heard of it. My MO has mentioned Doxil, eribulin, gemzar, and navilbene as the conventional therapies she’s think8ng about and perhaps a clinical trial my MO at MSK thought might be good. So we’ll see. Meanwhile 2 days of rads and all is good. I see my RO tomorrow for her to evaluate my skin after treatment #3. Then my DH and I are going out to lunch in our old neighborhood in Manhattan and walk around and explore ( we moved to Hoboken 17 years ago) , as I took the day off. Yeah !
@cookie54 thanks for the good vibes and well wishes. I understand your reticence on 6 month scans. How wonderful though that you’ve been stable and that is the reason ! I am so happy for you. Fingers crossed that May brings continued good news. It is one day at a time that is for sure.
One month my MO is talking about a future of drug holidays if my NED continued, and two months later at the visit we are talking about new drugs to consider as I have a progression of skin Mets. It’s all good, learning to adapt and enjoy life is the name of the game. I’m grateful to have a positive nature !@gaurykris so sorry to read about your moms infection and hospital stay. I don’t know anything about liver inflammation and crp counts. I hope it clears quickly and steadily. Yes I agree, it’s one day at a time. Healing matters! Patience is also something we learn on this journey.
Hugs to all ❤️❤️❤️❤️
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@rlschaller Thanks, yes agree living is the name of the game! As you have experienced unfortunately nothing is guaranteed and we have to be ready for whatever comes our way.
@gaurykris I'm sorry I don't have anything to add to your mom's CRP. Hope your mom is doing better today and you get some good feedback from the docs to help you understand.
@scgal08 Hope all is going well with you.
Happy to see the sun here in NJ today! Hope everyone has a good day😎
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Yes gals but some days the worry consumes me. Hope for the best and prepare for the worst aptly suits our situation
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@rlschaller Good to hear that you are tolerating radiation well, and that your RO is keeping tabs on your skin's condition. That is interesting information regarding the drugs that your MO is thinking of for your next steps. I haven't heard of any of them, and will do some research. Thank you for that.
My MO happens to be meeting this week with some colleagues about how to proceed with patients who are eligible for both Enhertu and Trodelvy. While she doesn't expect an obvious answer as to which is best, she will be calling me after the meeting and we will discuss, again. In the interim, she has requested a chemo start date of either the 14th or 15th.
Have your skin mets been bothersome in any way? Mine have only recently become sore, a bit itchy, and tight. All along they have been only visible, not felt.
@cookie54 Thank you for your good wishes. I will add another voice agreeing that six months is too long between scans, from our patient perspective!
@cookie54 All the best to your mom.
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Hi gals,
Just read this article and wanted to share
Basically “We can advise patients to consume a diet low in omega-6 fatty acids, which is not significantly different from the general advice to lower red meat, fat, and sodium intake. We also are exploring therapeutic options to block fatty acid accumulation and immunosuppressive signals between the cancer cells and the neutrophils.” We’ll see where this goes… would love something to fix the resistance .
@scgal08 - my MO told me yesterday she wants to start me on Doxil after radiation, it’s a strong one but every 3 weeks infusion which is good, gives me some breathing space. Went for a baseline Eco cardigram today as prep. Radiation goes until May 1 so probably won’t start the new chemo till May 7. And yes, my Mets too were just visible and had no sensations. But these new ones sometimes feel tight and sensitive . I thought because they were in the axilla area, which is a sensitive spot. We start radiating it tomorrow. We started the side lesion a week ago, and it’s showing improvement so that is good news. ❤️
Cloudy here in Hoboken. But love the daffodils everywhere! Hugs to all.
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@rlschaller Thanks for posting the TNBC article above. Scientists have been saying for some time that the typical North American diet is far too heavy on omega-6s and that we should consume more omega-3s, but suggested eating patterns don't tend to even mention omegas. Wouldn't that be something to hear TNBC no longer characterized (every time you hear of it) as "aggressive"!
Will you be having Doxil because you were already treated with Doxorubicin, given that the latter is not supposed to be given for more than one course of treatment? I'm having an echocardiogram too, tomorrow.
The now prickly-painful skin mets are disconcerting. I was just reading that an area that was previously radiated, such as for skin mets due to MBC, can be radiated again. That seems to contradict prevailing wisdom. It may be a different type of radiation. Something else to ask my MO about.
That's great that after a few treatments you are already seeing skin lesion improvement. Good luck with the next batch of treatments!
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@rlschaller Thanks for the informative article, very interesting and hopeful. Glad to hear you have your plan in place after rads. Great news that you are already seeing improvement may it continue to total resolution.
@scgal08 Gook luck tomorrow with Echo, hope it's squeky clean.
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@scgal08 @cookie54 @gaurykris - Morning and Happy Sunday. Happy Passover to those who celebrate.
@cookie54 - Thank you. Fingers crossed. We started the axila and shoulder on Friday too. So happy to get all of these pesky Mets radiated quickly. Love my RO team, they remapped on Tuesday, plan approved and dry run on Thursday, and started second site on Friday. ❤️@scgal08 lol I know, I’d love to change and prove the narrative away from aggressive, to TNBC is stabilized with eliminating omega 6 and increasing these omega 3 dietary or other lifestyle changes… because the science shows systemic treatment plus ….. who knows, we’ll see ❤️ Correlations through clinical trials is the way forward, hopefully in our life times . I’d love to contribute to the greater knowledge .
So far my plant based diet and lifestyle focus on small joys many times, have definitely stabilized and or increased my energy, my Se are minimal with every treatment change, and knock on wood the Mets are still local. Trying to keep my immune system as strong and healthy as I can. So far so good. Not in my control lol…. If only ! Sorry your Mets are prickly, mine too before rads started. Now better. It is disconcerting. Hoping they can start your chemo soon, that should help!My MO prefers Doxil for the next round for a few reasons. I did well with this family of drug the first time around, with complete results and minimal SEs. And it has a possible longer effective time span vs the other conventional therapies she was thinking of. Hopefully it will contain the cancer this time around. The family of drugs that Enhertu and Trodelvy belong to, on the other hand, I did not respond to as well , so that family of drugs is not as effective for me as it is for a lot of gals. I know gals on this forum who have been on those’d drugs for years. I hope you become one of them ! 🙏❤️
@gaurykris - hope you and your mom are hanging in there.
Enjoy your Sundays everyone. Plan to go for a long walk, if the rain holds. Relax and cook a chickpea curry later (yum) with matzoh ball/dumplings. Hugs to all .1 -
She is ok now had infection after first dose chemo as she had stent now it is clearing up.next chemo Will be soon hopefully
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@rlschaller Hope you enjoyed a rain free nice walk today. Your RO team sounds fabulous. Happy to hear they are on top of things and are moving right along. Have a peaceful evening ❌⭕️
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Happy Tuesday, checking in to see how everyone is doing? I hope you enjoyed Easter if you celebrate. My step son was here visiting for a week, which was lovely. He lives in San Francisco and we see him 2x a year, so it was so nice.
I’m almost finished with radiation, 2 more days on the side lesion and 5 more for the axila. RO thought all looked good, they were getting crusty lol… which is a good thing. (Sorry if that’s too much info). After radiation onto Doxil. Another new chemo to adjust to, but I’m glad I still have options. I feel so good, it’s hard to remember I have this disease to manage. May it always be so.Super busy at work, but the semester is coming to a close thank goodness.. I’m ready for a little less teaching and more dreaming of what else I can get funded in my meditation work. I still have my Mindfulness Collaboratory grant funded project for two more months, then a break over the summer. I have a few new grant requests I need to put in, plus a conference I’m presenting At in June. I’m happy when I’m busy. And love the time to plan and relax. My RO is interested in radiation visualization , a specific type of meditation I do and she and I are going to see if we can get funding at the hospital to pilot a meditation and visualization program for radiation patients. I have to think that through a bit and send her some ideas, and she’ll look for the funding. It’s exciting, we’ll see if it goes anywhere.
I might ask you all for ideas.. if you could learn to Meditate and visualize during treatment, how might that help you ? ( I might ask that in a few of the threads I’m on as well )
❤️❤️❤️ to all. Hope you are doing well!
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@rlschaller Hello! It sounds as though your radiation is going well. Are you experiencing any side effects from it?
Continuing the TMI, did you mean that it was good that your skin mets were getting crusty? I'm wondering why that would be good …
Your meditation work is intriguing. Is this a program that you have come up with? I've intended to embark on meditation, but have yet to actually try it. It could only be helpful.
I'll be starting Trodelvy soon; just waiting to hear of the start date. And going a little wrangy waiting … speaking of the benefits of meditation.
Hope that all are doing well.
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@rlschaller So great to hear you are feeling so well and it doesn't seem to break your stride at all! Very exciting if you can collaborate with your RO to come up with a plan to help patients endure treatment. Also so glad you got to see your step son, family time is so precious. Easter was busy prepping and cooking but was a fabulous day. Let the countdown begin!
@scgal08 Hope you get a start date on Tredelvy soon, I understand how stressful waiting can be. Hugs.
Hi to all here, hope your doing well❤️
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@scgal108 - I hate the waiting too. Hope you get a quick start date. Glad you are going with Trodelvy. I did loose my hair though pretty quick on it, so you might want to prepare for that. I posted quite a bit on the Trodelvy thread. I actually bought a wig , and I love it. Thinking this was for the long haul, I invested in a nice one and no one can tell it’s a wig. Now my hair is growing back some, but I still wear it to work and out to restaurants etc.. At home not, feel like I get dressed up with it and then into lounging clothes without . Funny how our lifestyles change. Fingers crossed Trodelvy works for you for a long time ❤️ TMI - My MO made a face when I told her the RO said crusty was good lol… she simply said it was improving. Everyone wants me on a systemic treatment as the best answer so May 14 th that will start. I have no SE from the radiation, that I can tell.
And yes, meditation can be so helpful for those who are receptive to it. I’ve created a few programs over the years. This is one I have funding for at my work Pratt Institute The program on radiation visualization would be new, but exciting if we actually d it. I would love to help the gals going through treatment. Put my experiences forward to help others. We’ll see…There a lot of great apps if you want to dabble .. Calm is a good one. And Allevi8 is also good, dedicated to cancer patients. I started a thread here on BCO on Contemplative practices with lots of links if that is of interest at any time. Not many people post, but every week I post something…
@cookie54 (andrea) so glad your Easter was both yummy with all your good food prep, and joyous ! I haven’t had much time to post on the other threads we share, but I’ve been reading . Hugs 🤗 to you and yours, and Buster.
❤️ Rhonda
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hi gals, hope everyone is doing well. All finished with radiation. Looks like I have sunburn lol, but nodules are all gone! So nice . Next week is MRI and PET and meeting with MO at MSK for his take on the next line of treatment. My MO at Northwell thinks Doxil as I said, but wants his opinion before we start on May 14. Will keep you posted. Feeling great, and so glad I don’t have to go into the city for the 7:30am rads appts ! Lol…..
❤️❤️❤️ to all
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@rlschaller Congrats on finishing Rads! Yes oh how I remember the "sunburn" look, hope this wipes it out forever. Will keep you in my prayers next week for scans and MSK opinion. Happy to hear you're feeling great and will get started with your new plan soon. Hugs
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Hello to all in this little group with hope that everyone is doing well.
@rlschaller And well done to you for completing radiation, a rather arduous task to get through, daily no less. That's fabulous that it worked so well. Lots of moisturizing needed for that 'sunburn'! Bring on the big tub of Eucerin/Aquaphor!
Regarding your radiation visualization program, wouldn't it be wonderful if you could parlay that focus on meditation in the creative community into helping cancer patients undergoing radiation. The physical aspects of this insidious disease are just the tip of the iceberg.
The Insight Timer app has often been my friend. Most of the time I am asleep before the selection has finished.
I started Trodelvy last week and had the second treatment today. Cruising along on the steroid buzz at the moment. My MO started me on a half-dose so I am feeling relatively well.
I have heard that both hair thinning and hair loss occur with Trodelvy so we will see which one applies here. Hopefully I find out soon.
Please do let us know whether you will have Doxil or another treatment.
@cookie54 Do you have your scan(s) confirmed for end of May? Here's hoping that you get to remain on Xeloda.
I noted the Zoom meetup for this group back in March. I wonder if there will be another one.
Take care everyone.
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@scgal08 Hi there glad you're cruising along with Trodelvy and yikes the steroid buzz is real! Oh the hair, ugh fingers crossed for just thinning. I have heard it's a crap shoot too, I'm sorry that you even may have to deal with hair loss. I know we all do what we have to but it sure is nice to catch a break with some of the SE's.
My CT is on the 20th and all the crazy thoughts of what may be will start. I have been having such random weird pains all over lately but who knows maybe nothing. But of course we always feel like something might be brewing and if so we just keep trudging forward. I had an interesting morning I went for a port check at the hospital because it has been acting up on occasion plus I started having pain. Anyhow all is ok now. I had a fibrin sheath that formed on the wire acting like a clot. Doctor was able to clear it by the contrast being pushed through and saline flushes. I only use the port for my monthly labs and if change in treatment plan it's maintained and ready to go.
@gaurykris How's your mom been doing?
@rlschaller In your pocket this week for all your appointments, Hugs❣️
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@cookie54 All too true that we often attribute any random twinge or pain to a nefarious cause. Here's hoping that that is not at all the case for the ones that you have been having, and that there is some ease in your worry beforehand!
If I do lose my hair, it'll be the third time. At least it's far down my list of concerns, since it's a side effect that doesn't affect me physically.
Do you get scanxiety? Though it's more like post-scanxiety, in regard to the results.
Goodness, that sounds like a weird thing to happen with your port. That's a mercy that they were able to fix it. I just take mine for granted, assuming that it's there at the ready.
@rlschaller You certainly have a full week. Wishing you smooth sailing through your various appointments.
@gaurykris All the best to your mom, as ever.
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Hi gals, checking in after a busy week at work and appointments post radiation with a new MRI, PET completed. Waiting on results. All is well. Nothing on the portal yet. Dropped off discs at MSK yesterday, and will be Meeting with MSK MO tomorrow. It’s interesting, as I meditate and watch my mind around the results of the scans i know I will deal with what ever is here. Progression or not. But waiting to know is weird, as you all know. Will keep you posted. And rooting for an easy response to what has to be dealt with lol. Finally off that circade Velcro sleeve for my lymphedema (46 days) and have my permanent garment now, lymphedema sleeve is easy and comfortable. The glove I don’t like, my fingers tingle with it… but I’m getting used to it And my hand swelling is minimal, so I can take it off for hours at a time which I like.. and I do take it off ! The body needs so much monitoring , gosh!
I love insight timer ! I used it for a long time. I now love plum village app, as it has a 20 minute timer with 4 interval bells. I hear those bells, and immediately relax. Haven’t heard back from my RO about the proposed radiation visualization study yet , and yes it’s only been a week, but I would love to bring my work to cancer gals, we’ll see…. For those interested, BCO is doing a webinar on cancer , well-being and mental health , and asked me to lead a 10 minute guided meditation . It’s on May 20 4:30 EST. I also did a “story” for them on meditation and cancer for the next newsletter. When you get it let me know what you think.
@scgal08 and am so glad Trodelvy at a lower does is working for you. Yeah that you are feeling good! I bought a wig which I still wear, and love it. Lost my hair twice, small potatoes so to speak, I agree there are bigger issues at play given the larger issues on our plates… but I admit I like that my hair is growing back. With Doxil it might fall out agin though, so trying not to be attached to it. Hugs 🙏
@cookie54 in your pocket for May 20th. I so understand, each scan brings its many thoughts.. about uncertainty, change, each thought of life or death , or hope or…. Many questions and realities. We are here for you ❤️ Andrea !@gaurykris in your pockets for a moms renetry to chemo. Let us know how we can support you.
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@rlschaller Glad to hear your week went smoothly and scans are completed. Agree, I always say we can’t change what is there but change the way we approach it. I can tell you are well equipped to handle whatever is sent your way. Great news on the sleeve , glad you can take a break with the glove. Such a great idea that your leading a mediation for the group, I’m hoping to attend. Sending positive thoughts and energy your way for tomorrow ❤️
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