De Novo Stage IV
Comments
-
@denny123 I hear you about the winter weather. The air has that cool winter chill to it now. I didn’t go too dark on my eyebrows, but she did a bit of an outline so I would know where to put the makeup should I need it I guess we will see!
@superdenovo37 Nice to meet you. I wish you continued success on Enhertu! What wonderful memories you have made with your family over the past three years!
@kbl That’s a good story! I would have screamed to get it too! Many years ago, we had an infestation of grasshoppers here. You couldn’t walk down a path without them jumping all over in front of you. Gross. Also had one with caterpillars. That was probably worse. They would drop on you from trees! It was disgusting!
My consult with the new MO went pretty good. She’s definitely better than the first one I had. She brought up the HER2climb-05 trial and asked if it might be something I would would be interested in, which is the same one Jobbibo mentioned earlier in the thread. She also suggested I consider starting Xgeva since some of the bone Mets were in my spine. The first MO didn’t say a word about any of this…
Highlights of my PET scan results after 3 treatments - In comparison to prior exam, previously intense focal hypermetabolism to an initially 4.2 x 2.5 cm right upper inner quadrant breast lump has almost completely resolved. No residual right axillary or right supraclavicular lymphadenopathy or focal lymph node uptake of concern. There is no residual focal hypermetabolic activity within previously seen, multifocal initially lytic osseous lesions to the spine, ribs and left ischial bone to be identified, and the majority of these lesions now appear as osteosclerotic lesions.
CONCLUSION: Excellent metabolic response to therapy without evidence of significant, residual hypermetabolic lesions to lymph nodes, liver and bone. Previously osteolytic lesions now appear partly sclerotic. No evidence for locoregional recurrence or new distant metastatic disease.
I’m feeling a bit conflicted or something from the consult and these results. The new MO quoted the usual statistics for HER2+, including how some people are on first line treatment for only a few months, while others are on it for years before progression. Other than commenting on the good response so far, I didn’t get a sense of long term hope for me from her. I’m not sure if I subconsciously had false hope that the previous scans were wrong (so many inconsistencies!) or what, but I feel like I’ve fallen back to how I felt when I was first diagnosed. Sadness and hopelessness. Even though the PET scan results are promising. I don’t know what I was expecting or even hoping for. Maybe it’s certainty I am looking for and it’s just not something I will ever be able to get. Which is proving very difficult for me to come to terms with.
Thank you for listening.
0 -
@superdenovo37, I am so glad to hear that the treatment is working for you, I hope you get many many more years with your beautiful family. Reading your post gives me hope. I'm recently diagnosed, 42 and my little girl is 5,5. I hope to stick around many more years to see her grow up. That is my biggest wish and hope for the future.
1 -
harrow, please do your best to accept that for now, you had good scan results. Your new MO cannot say what kind of long term results you will have. Currently, you are responding well to treatment and that is a very good thing. Allow yourself to be glad of that. No one can say what the future holds. What I learned was that the opposite of uncertainty isn’t “certainty”, it is open-mindedness. Be open to the possibility that you may be one who could be on a first line treatment for a long time. Why not? If, further down the road you learn differently, you can deal with it then. For now, you are on a treatment that is working.
0 -
@denny123 and @divinemrsm thank you both for responding. And you’re right. I need to try and accept what is in front of me right now and not worry so much about the future or what might happen later down the road. It’s just really hard to do sometimes. Some days I believe I can be like many others on here who are living years and decades. Why can’t I defy the odds as well? But then other days, I go down the rabbit hole.
Open-mindedness. I will keep reminding myself of that. Thank you.
@grit_a Hello and welcome. I’m sorry to hear of your diagnosis. This thread is full of caring people with lots of knowledge, support and hope. I’m sending you positive thoughts.
0 -
Harrow, as has been said already, your response looks great, especially after only 3 treatments and I don’t know what HER2+ patients the onc is referring to that don’t get very long from it but I’m my experience, most get years. I had a near complete response and did very well on Herceptin and Perjeta for 3 1/2 years and only moved on to something new due to a minor progression of a bone met and H&P’s inability to get to my brain mets. Personally, I think you’ve got every reason to believe that good and stable scans will continue. I know it’s hard to be optimistic sometimes but there’s no reason not to be either.
0 -
@kbl - So glad you had a good time camping and that you’re still feeling well with Orserdu. That grasshopper would have freaked me out haha! Will continue to send all the good vibes that it stays that way!
@harrow - Happy to hear the hydrocortisone and anti fungal cream seem to be helping! So glad you’re liking your new oncologist. If you do end up doing that trial let me know! Interesting your first oncologist didn’t mention a bone strengthener. I’m on one called Zometa, definitely pretty standard to have one of those drugs if you have bone mets. Also a huge congrats on the results of your PET! I completely understand how you’re feeling. I had good results after my first set of scans and my family and husband were so elated and I just kinda felt… numb I guess? Just waiting for the other shoe to drop type thing. I’ve gotten better with it over time for sure though. There’s a Facebook group specifically for people that are metastatic HER2+ (can be triple positive as well) and I’ve seen SO many people there who have been at this for years, a lot over a decade even. There’s a good amount of treatments out there for HER2+ and my second opinion oncologist stressed that there will be new drugs coming out in the next 3-5 years that we’re not even talking about yet. Even if we progress sooner than expected there’s some good drugs out there that people have lasted longer on than they did their initial first line. That being said it’s completely understandable to feel down and worry about the uncertainty of it all. I let myself feel those emotions quite often still, it’s just gotten easier to not stay stuck there.
@superdenovo37 - Nice to meet you and I love hearing that you’ve been doing so well on Enhertu! I’m 29 and definitely feel the frustration that comes with being diagnosed so young. It’s so encouraging to hear you’ve been able to watch your kids grow and celebrating your 40th!
@denny123 - I hope you’re staying warm with this cold weather! It’s gotten pretty cold here in Nebraska. I like chilly weather but hate the cold!
@grit_a - Welcome! So sorry you have to be here but glad you found us. I hope treatment is going well for you and that you’ll have no issues seeing your daughter grow up. I’ll echo that this is a great place for support and for people to share their knowledge / experiences.
@divinemrsm and @illimae - glad to see both of you popping in the thread. Hope all is going well with you both!
Hopefully I didn’t miss anyone but hope everyone is doing well and sending all the good vibes!
Started cycle 6 / my last cycle of Taxol today. Only 2 more infusions to go, such a weird feeling. Excited yet nervous to move on to maintenance / the HER2climb-05 trial. Will get scans the week of Thanksgiving. With my Signatera test dropping down to 0 and tumor markers being in the normal range I’m trying my best to keep a positive attitude. Last scans (after 2 cycles) I still had innumerable liver mets but they were all shrinking. Really hoping at least the majority have resolved by now!
0 -
Harrow, your scan looks awesome. I get your feelings, though. This is scary, and once we’re diagnosed, the question of how long will we be here pops into our head almost daily. I have always told myself to allow my feelings. Trying to suppress them will always make it worse. If I feel the need to cry, I cry. If I feel depressed, I allow it and know it will lift in a few days. If I’m tired, I nap. I’m sending you hugs.
The caterpillars here are evil. The hairy ones have dropped on my husband twice, and just one will give him a horrible rash with welts. One dropped on his neck and one somehow ended up on his stomach. He said it burned really bad. They’re back too. I’m hoping the cold weather the next few days will kill them.
Jobbibo, thank you. I appreciate that. I’m so glad you’re almost done with the Taxol and can enter the clinical trial. I’m wishing you continued success with the shrinking of your tumors.
0 -
Wow-evil caterpillars! I had a lot of the spotted lantern flies here in PA. A month ago, my grandson went through 3 cans of wasp spray killing them.
Then I read that soapy water was all that we needed. So I bought a super soaker for him and he had a blast, shooting them. They are still around, but not as many.
0 -
Denny123, can’t say I’ve ever heard of those. That must have been awesome for your grandson. Who doesn’t love a super soaker? These are the ones who got my husband
0 -
Wow! Y`all have been busy while I was gone! We took a mini vacation to Branson, Missouri. I hadn't been there since I was a little kid. The shows were good, and the leaves were pretty - not quite full color, but pretty anyway. The weather went from summer to winter while we were there!
Welcome to superdenovo and grit_a. I can only imagine how frustrating this dx is at such a young age.
Harrow - your scan results sound great. I think it's normal to have ups and downs, even when you get good news. "Waiting for the other shoe to drop" is kind of a normal place for me, but I try to stay focused on the fact that I'm really still doing well, so I might as well enjoy it. "I'm okay until I'm not okay." I'm glad you could change MOs, but it sounds like you didn't get the one you wanted?
Jobibbo - your scan results sound great, too - not all clear, yet, but getting there. Did your port issues ever resolve? Good luck on the clinical trial.
Kbl - yay for time with your grandson and yuck to the evil caterpillars.
Your good thought about my biopsy carried through. I got the results while I was gone and met with my MO today. There were scarce active cancer cells in the sample, consistent with "residual or quiescent" metastatic disease. There are not enough active cells to warrant genomic testing. So...the tumor markers and scans indicate a minor change, but it appears to be slow moving. MO is not writing off my current treatment yet. We're going to wait and do another PET scan and MRI in February. I call it a win.
1 -
I agree with you, kbl, that we should allow ourselves to feel all our feelings. I don’t want to make it seem like I’m skipping thru tulips tossing rose petals into rainbow filled skies. But I’ve learned to allow myself to feel cautious optimism with good scans. Yes, I know it could change, and at times it has, but all my worrying does not alter the outcome. For me, it’s been a matter of living more in the moment and trying not to project myself into an unknown future. Years ago I started framing it as living with metastatic breast cancer, not dying from it. It’s stolen parts of my life, I don’t want it to take more. One way I read to look at it is it’s like a surfer riding a big wave. You keep making adjustments to find the balance in it.
0 -
@harrow…I was so afraid of a recurrence, but I did have one in 2014, and the nodes are gone now. Since I was dx'd almost 22 years ago, there have been a lot of new treatments developed.
It takes a while to feel kind of normal again. I have always imagined my next scan showing zero problems.
@kbl.. that is one ugly caterpillar. The lantern flies were really prevalent this summer in PA. Some places had solid coverage on cars and buildings. They are attracted to the Tree of Heaven, and I had a few of those small trees behind my shed. I took care of those with weed killer.
@seeq … that sounds great!
We got our first snow here in PA. Just a few inches, but I am not happy about it.
0 -
Seeq - Thanks! Hoping scans next month will show a big improvement. My surgeon ended up not putting a new port in because my previous incision isn’t healing like expected and she thinks the new one would do the same while actively on chemo. So getting my last few chemo infusions through my arm instead!
That does sound like pretty good news from the biopsy! The fact they want to wait and see since it’s slow moving and keep you on current treatment doesn’t sound like a bad idea at all.
0 -
Thought I'd update you all on my wife's treatment.
As you may recall, she was diagnosed in April 23 with de novo invasive lobular carcinoma, ER+, PR+, HER2-. Mets to spine, bone marrow, and GI tract. Didn't have any targetable genetic mutations so began the standard AI, ovary suppression, bone strengthener, CDK 4/6 inhibitor (ribociclib) therapy.
She's been seeing the oncologist every month following blood draws to make sure everything was trending in the right direction. He follows tumor markers (CA 15-3, 27-29, and 125). Everything has been trending in the right direction, though it seems to be slowing down lately which caused him to say he would consider her to have a partial response, but not a complete one. But he also said ILC is a slow moving disease, and its response to therapy may be slower as a result. She has had two imaging studies done since diagnosis with the most recent being a CT with contrast last week. Got the report from that today and there were essentially no remarkable findings with the words "No evidence of new metastatic lesions" being music to our ears. The thickening of her colon mentioned in the initial report back in February and the fluid in the abdomen mentioned at the same time both seem to have resolved.
Her red blood cell count is just under what it should normally be which is a huge improvement over where she was back in January prior to her diagnosis. She was severely anemic back then, but because it was chronic she was basically asymptomatic from it. Her ANC has also been hovering very low (around 1000) which caused the MO to mention possible dose reduction of the ribociclib. He also mentioned that the red blood cells can also be suppressed by the CDK 4/6i so figures that probably accounts for why she's still in the anemic range.
Anyway, that's our good news report. I continue to follow everyone's stories; rejoicing with those who rejoice and mourning with those who mourn. I hope you all are enjoying the transition to autumn which is fully upon us here in the Pacific Northwest.
1 -
@bighubs …thanks for the update! It all sounds very good. I have been amazed for my almost 22 years at how something will show up on one scan and be gone the next time.
My reds are always in the very low range, but I am not anemic. My onc isn't worried about it, though.
Please tell her that we are praying for her!
Denise
1 -
I got my Covid booster today…..which is #5. I had Pfizer for the first 4, but this one was Moderna. Since I have bilateral lymphedema, I have to get the shot in my butt.
At least my arm isn't sore!
Denise
0 -
SeeQ, Thank you, and, yes, yucky caterpillars is right
I hope you had a great time, and what great news to be able to stay the course, at least until the next scan to see how it’s going. I’m so glad there was not much to see. I had micro mets in my stomach in December, and it was advanced a little in July when I went and had my endoscopy. I always wonder if the Xeloda they tooK me off of was actually working on my stomach. I’m still not losing weight, though, so it’s still okay. I hope you get a lot more time on the Verzenio.
DivineMrsM, I like the way you think. I think what I question is why does it take some so quickly and others like us more slowly. I’m so appreciative to still be here but do wonder why sometimes. I guess if the medical community had the answer, they would fill us in.
Denny123, something else I’ve not heard of, a tree of Heaven. I’ll have to look that up. And I was freezing today in the 60s. I could not do snow. I hope your butt still isn’t too sore from the booster.
Bighubs, it’s so good to hear from you. I was looking at older posts yesterday, and I saw your name and wondered how things were going. And then here you are today with great news. I’m so glad the treatment is working, and I know you are relieved to know your wife is doing better. It’s true that red cells can be affected by the drugs. I was off drugs for a few months, and my red blood cell count still hovers between normal and just under.
We don’t have autumn here in Florida, but where we went camping this past week did some some leaves changing, and I got to see them just starting to change when I visited my grandson. Enjoy the cooler weather.
0 -
@illimae thanks for the advice. I am trying to be more optimistic. I’ve taken to searching out stories in here that give me hope and just keep re-reading them. I prefer your experience for years on H&P! My husband thinks the MO was just trying to toe the line.
@jobbibo I hope you’re feeling ok from your recent treatment. Does two more infusions mean you will have a total of 8? I’m only expected to have 6, so we might just finish at the same time. Sorry, I can’t recall if yours are weekly or every 3 weeks. I’ll be done in mid-December. I will let you know if I do the clinical trial. I hope your upcoming scans show that everything has continued to shrink and are resolved! I am sending positive thoughts your way!
@kbl that’s good advice to allow my feelings and trust that the depression and sadness will lift after a few days. I just get caught up in the feelings of the moment. Ok…your caterpillar stories have given me the heebie jeebies! And your poor husband! I had no idea caterpillars could cause a reaction. Is it an allergy?
I agree with your comment about DivineMrsM and how she thinks. I’m also wonder how some people get there sooner than others. I read all the posts and just admire how calm, positive and rationale everyone is. It’s really quite impressive given our situations
@seeq welcome back! I’m glad to hear you have a great mini vacation! What kind of shows did you see when you were there? I’ve never been to Missouri. I’m glad you got some stable news from the biopsy and that whatever may be going on is likely slow moving! I will keep my fingers crossed for you for your next scans. May I ask what the genomic testing be for?
“I’m ok until I’m not ok” is a good motto - thank you. I’m going to use that when I feel myself becoming overwhelmed with the darker thoughts. No, I didn’t get the MO that I requested but this new one is definitely better than the old one so I’ll take what I can get!
@denny123 you give me such inspiration! I love that you have been able to get to a place where you just expect no problems. I think that is amazing! I hope to be there one day. I am getting my COVID/flu shot next week. Sounds like it will be Moderna too I heard the pharmacist say there is a Pfizer shortage here?
@bighubs What great news about your wife’s recent scan results! I hope she continues to respond and things continue to trend in the right direction. Glad to see her RBC counts getting to be near normal range!
0 -
@bighubs - thanks for sharing your good news. It's always nice to hear when someone's treatment is working. FWIW, my RBC and WBC have been consistently low the whole time I've been in treatment. I think it's just inherent to the treatment.
@harrow - I'm glad your new MO is an improvement for you. This disease is hard enough without a difficult relationship with your MO. Genomic testing looks for mutations in the tumor, which are often different than genetic (inherited) mutations. Certain mutations in the tumor provide other treatment opportunities; two examples are Piqray for PIK3CA, or Oserdu for ESR1 mutations.
In Branson, we took a dinner cruise on a paddleboat that had great views of a nearby lake and included a musical show. We also went to the Dolly Parton Stampede, which is an arena show with a casual dinner. Our last two shows were a comedian (Yakov Smirnoff - there's more to him than I realized) and a magic show (Rick Thomas). We enjoyed all the shows we saw. We also went to a winery and did a little shopping without overtaxing ourselves too much. We were able to stop and have a nice dinner with my dsd, son-in-law, and grandson on our drive home. Overall, it was a nice break from the day-to-day.
This pic is from the paddleboat.
1 -
@bighubs - Yay for good scans! Such great news, so glad her treatment is working. If the onc does decide on a dose reduction I hope it helps.
@harrow - Sorry I should have clarified I’m getting weekly Taxol where 3 weekly infusions is one cycle. I have 2 more weekly infusions and that will be the end of my 6th and final cycle. November 14th will be my last infusion and just found out today I’m getting scans the 21st, it’s coming up so fast haha. You’re not too far away either though that’s exciting! Sending positive vibes your way too!
@seeq - Wow sounds like such a fun time! That’s so cool you got to see so many shows. Love the picture!
0 -
Just touching base as I pass my 12th year mark with mbc. Nothing new to tell although I am coming to the end of my 3 month vacay from being on any tx at all! I don’t feel perfect but quite a bit better as 12 years on various AI’s was wearing me down. We’ll see what my mo has to say next week (she was the one who proposed the break).
Barring being in wooded areas, Northern CA is relatively bug free (flies, ants, bees but mosquitoes are rare). I would not like bugs just dropping on to me! Many homes in San Francisco don’t even have window screens. When I taught science units on living things (mostly grade 1 and kindergarten) we ordered caterpillars that we watched as metamorphosis occurred. They came in a big jar and were tiny as threads. I had to use a fine paint brush to move them into individual cups that each student kept on their desks. As a professional, I gritted my teeth and did my job 😂. It was lovely when they finally emerged as Painted Lady butterflies but I never got fully used to dealing with bugs!1 -
@exbrnxgal….Thanks for stopping in and I hope that you will continue to feel good. I sure would love to quit treatment but I don't dare to. Dec 12 will be the start of my 22nd year since my MBC dx. yay me.
Your "caterpillar" story reminded me that when I was in grade school, I was allowed to bring home a tank with a cacoon in it. I guess that it eventually became a butterfly, but that was so long ago.
How great it would be to not have any bugs! I am in PA, and there are a lot of bugs here. The spotted lantern flies were a real problem.
Be sure to stop back and give us an update!
Denise
0 -
harrow, you’re still so new to the diagnosis, it’s no surprise you are experiencing a roller coaster of emotions. I remember my first months after getting the diagnoses of mets, reading some posts from other women here in the stage iv forum who were doing things like buying new coats, buying new cars, going on vacation and my mind was like, whaaaaa?? I couldn’t believe they were going about their daily lives, still moving forward while navigating this disease. Their posts were extremely helpful at a time I most needed it.
0 -
Harrow, these caterpillars are hairy and turn into moths. I didn’t know they could do that either until it happened to my husband twice. He’s allergic to ant bites too, so I would assume he had a stronger reaction than I would, but I don’t want to find out.
SeeQ, great picture and sounds like a lot of fun.
exbrnxgrl, I’m waving hi. I was also off treatment for a few months, but, sadly, I didn’t feel much different. I read Faslodex can stay in your system for 200 days. I’m glad you were able to have a break. I love your story. It put a smile on my face.
0 -
seeq, we saw the Dolly Stampede in Pigeon Forge and loved it, with its unique meal of food items all of which can be eaten with the hands, no utensils needed, while watching a fabulous show in the middle of the arena! Great entertainment! Your photo is beautiful!
Denny123, we saw the lantern flies last month when we were at Robinson Mall. My gosh are they big! They haven’t yet invaded our area of Ohio.
Exbrnxgrl, congrats on passing the 12th year mark as well as the 3 month vacay from the AI. It will be interesting to hear what your onc has to say on your next visit.
0 -
@divinemrsm Aren't they though? Today I was outside, sadly cutting back my pretty flowers that died from the frost. And today was the first time that I didn't see any of them. I guess they froze….good. They will be back next year.
0 -
Dear @superdenovo37, congratulations on 3 years. I know very well how you feel. My wife was diagnosed at 33 when our son was 2… now words to describe feelings or how our life suddenly was up side down. I strongly believe you'll see your children grow up and beyond. With all my heart, Saulius
0 -
Hi everyone, I hope you all had a good week.
@seeq those shows sound like so much fun! The photo from the paddle boat is beautiful. Looks very peaceful.
@exbrnxgrl congratulations for passing your 12 year mark! Stories like yours continue to give me hope when I need it most, so thank you! Please keep us posted on what your MO says post-treatment vacation. I’m glad you were able to feel better on your break.
@divinemrsm yes, I am still new to the diagnosis and I feel exactly as you described. As I move towards the end of my chemo and my life returns to be more “normal”, along with getting my hair back, I hope to progress into a more positive headspace on a more regular basis.
@kbl moths are so gross! It weird how butterflies can be so beautiful and moths are just…not. I don’t blame you. I wouldn’t want to find out if I react either!
I have a question that hopefully some of you can shed some light on. I met with the clinical trial nurse to sign the tissue consent form today and she mentioned that as part of the HER2climb-05 trial, I would be moved to Phesgo injections rather than IV H&P, as well as pills for the Tucatinib for helping to prevent brain mets (or the placebo). Does anyone have experience with the injections? What kind of side effects do you experience vs the infusion? I’ve only ever had H&P with docetaxel so I don’t know what side effects they might give me alone. The nurse said that it works the same as the IV drugs. However, I find it strange to think that they can condense two giant IV bags into two needles and say it’s the same dosage and efficacy. I’ll do a search on here as well and see if I can find other posts about it.
I hope you are able to enjoy your weekend!
0 -
oh, those lantern flies! I was recently in New Jersey for a visit and I encountered a few of them. They don’t move when you bang on the window or swat them! And they make that loud buzzing sound, one went straight for my head while I was out walking.
I was glad to leave and happy I had left the Northeast before they arrived on the scene! YUCKY!
@harrow I am on PHESGO and I think it’s been about 2 years now. I couldn’t wait to get rid of the IV I even went on the Herceptin shot before PHESGO became available, so I was doing one Herceptin Hylecta shot and one IV for perjeta.
But anything that shortened the time I spend in the infusion rooms is a win for me. Not to mention, never had a port, did not want one and my veins were getting tired of the incessant sticking.
I have continued to be NED on PHESGO so it appears to work just as well as IV treatment for me.
They administer the shot over 5 minutes (8 minutes for your initial one) and it is relatively pain free, just a little bit of burning on entry or exit of the needle, I think that is due to the medication making contact with skin as it passes through. I get the shot in my thigh, either on top or on the side, alternate legs each time.
EDIT: I double checked and yes, it is a little over 2 years I have been on PHESGO, I started in early summer 2021.
0
