De Novo Stage IV
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I hope you will all indulge me in a rant/vent/pity party/whatever…I’m having a rough week. I’m 9 weeks in to a 16 week course of AC-T. It’s hard to hide chemo and baldness, so everyone knows. I’m so tired of people asking me how I’m feeling. I know they mean well, but all they’re asking about is my physical self, how I’m handling the chemo (which has been a piece of cake) no one really wants to hear, or can even understand that the horror of this is all mental. I’m coming to terms with the loss of so many things. Even if I’m some amazing outlier I’m still grasping at the scraps of 6, 8, 10 years, instead of the 30 I thought I’d have. Yeah, I know, nothing is guaranteed, anyone could get hit by a bus…
I’m sick of answering “How are you feeling?” when inside I’m screaming. Like I said, I’m just having a rough week. I’m usually a pretty positive person, but this diagnosis is like a nightmare I can’t wake up from
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Mozuke1, I’m so sorry you’re struggling. The bus analogy doesn’t compare. If I was to get hit by a bus, I would not have the daily mind f*** of cancer. It’s just not the same. Our circumstances are so different. It’s really not the death part that’s hard sometimes, it’s the living part. Some days we have no energy or we’re sad knowing we won’t be living as long as we’d have liked. Nobody understands like we do. Hugs to you, and I hope it gets better for you
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Mozuke- I too understand. I have said before the mental is almost worse than the physical of cancer. I will be watching TV and a commercial for St. Jude Hospital comes on--- kids under treatment for cancer. One kid said "The worst part of cancer is knowing you have cancer". That really struck home with me. YES !!
The loss of the future, finances, job, friends in some cases. Lots of losses. And the constant, in your face, knowledge of your mortality.
And, I too, have said "this is a nightmare I cannot wake from".
Mozuke- Come here to vent anytime. We understand.
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Alright, still struggling with the To Radiate or Not To Radiate on the breast/axilla post surgery.
I got the RO discussion today and she said that there is no clear cut answer here - I had extracapsular invasion in 2 nodes, some cancer was found in the lymph channels (there is a special name for them and I cant think of it right now), and apparently there was some skin infiltration, although surgeon got clean margins. If I do want to go ahead with this, it would be five days, dose dense, not the three weeks MO/SO thought it would be. I would have to therefore be off palbo for only two weeks, which makes this a bit easier to decide, and not a whole extra month or five weeks. She had also checked the research and there are either very few studies or no studies on RT in this case that would support one decision over another.
I scan next Monday and see MO the Monday after for results, so the soonest radiation could happen would be the first week of March, which gives me time to go round the houses again and see all the surgeons and RO as part of the check up process. I figure I can see what the scans say and plan around that. I also want to get my hands on the entire path report because hearing it second hand from different docs is not helping.
My concerns about not doing it are the usual - risk of lymphadema, risk of adverse skin outcome, risk of impact on the lungs and the reconstructed breast.
Ugh - so tired of making cancer decisions! If anyone has some thoughts one way or another im open to them. I dont know if its worth getting a second opinion and how long that may take, although I think I may still have that second opinion service available through work and that would go to Dana Farber.
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Dear SondraF, in my modest opinion - definitely to radiate (as you have some lymphovascular and skin invasion (LVI)). Today's radiation is very targeted (they plan it and other body parts get minimum) compared to what it was. There are many tings that "could happen", including very good things, like abscopal effect, synergy with ibrance, etc. Also, your MO is right about the research but as far as I read, ER positivity, low tumor burden and good performance status are associated with recommending radiation. Just one thing that I do not understand - why would one drop Ibrance before/during radiation, is it because of increased possible anemia or neutropenia?
I remembered someone on these forums also was confronted with "you can anyway be hit by bus" and shot back with something like "yeah, sure, but the difference is that we have our feet in concrete, and the bus without brakes is running towards you". I think it was very accurate.
Saulius
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Sondraf, please keep us posted. I am in a similar boat. My cancer is in the lower inner quadrant of my breast, so basically in the center of my chest. There just isn't much research as its not common. I think we are in uncharted waters treatment-wise. Decisions constantly revisited and so many discussions. I think I mentioned it before. I've had my doctors calling each other while I'm in the office to go over what what said at the last conference. Right now, my MO is really advocating for some specific radiation. Mainly to the mets in sternum and internal mammary nodes where they don't want to operate, as well as the usual post surgery chest wall. She suggests against radiating the traditional other nodes as there was no involvement there. Then she clarified, "but I am not a radiologist. Let's see what dr. RO says". Surgeon was not sure she'd suggest radiation at all, but she also hesitated on doing the surgery. She is a little more "Old school".
I see RO next week. I too am a little afraid of being off the Ibrance so long, they said it was working. Almost a month off pre-surgery, a month off healing, and if I have radiation it will be at least the 6 weeks of that treatment off. I don’t know if there needs to be recovery time after that.
saulius, yes both treatments cause neutropenia, so we can only have one at a time.
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DanceMom, I know it's scary being off the meds, but if it makes you feel any better, I am the one who had no treatment for six years because I didn't know it was there. It took that long for it to spread to my stomach. I don't know if that will help you feel any better, but it is slow growing, so you will hopefully be fine.
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Chiming in to let you know that we have our
VIRTUAL MBC Meetup TODAY (WEDNESDAY) AT 4PM, ET:
Register here: https://breastcancer-org.zoom.us/meeting/register/...
Hope to see some of you there!
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Having slept on this and done some shower thinking, I think I am going to go ahead with the radiation. Given the factors and its only five days, let's just do it and I can have some peace of mind that I did everything possible to limit further problems in this area which effectively has been more troublesome than my distant mets. I know Ibrance has worked well for some and wiped out their primaries, but it only sort of did something for mine so makes sense to give the area a good zap!
The five day regimen (vs 3 weeks) is fast becoming the accepted standard in the UK (although various reasons for this). Here is the info:
https://www.icr.ac.uk/our-research/centres-and-col...
The pausing of Ibrance is more for safety reasons I guess, in lieu of any substantial safety data the authoritative body here will accept, though there is this study showing at least for distant mets there wasn't an increase in toxicity, however, it was done within the same time frame I am considering for the breast:
https://www.advancesradonc.org/article/S2452-1094(19)30041-7/fulltext
But then there is this tiny study that included de novo patients and radiating the breast area:
https://www.nature.com/articles/s41416-020-0957-9
One of the strengths of our study was to include nine patients (30%) with de novo metastatic breast carcinoma, who were at least stable after 6 months of palbociclib and received LR irradiation. Palbociclib had to be discontinued during RT in two of them because of grade 3 dermatitis and pain, and grade 2 oesophagitis, respectively. However, in both cases (patients 8 and 9), the PTV was particularly large compared with other LR irradiation volumes. It is therefore difficult to conclude that the palbo-RT combination was responsible for these toxicities.
Saulius - hope things are ok out there given the regional sabre-rattling!
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sondraf thank you so much for sharing the studies. I was diagnosed with Eosinophilic esophagitis (EoE), a couple of years before the cancer, so I am DEFINITELY bringing that up with my radiologist!
Kbl, thanks for encouragement
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Dear Sondra, I wish you all the best, and really am happy you'll go for rads. 5 fractions well-targeted should be well tolerated and will do the job. If your MO is up to check your WBC, I believe there's no need to stop Ibrance, if WBCs are okay. Other SEs... not everyone gets them. Saulius
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Hello all -
SondraF-Im glad you decided to do the radiation-I don't have all the knowledge Saulius has but I feel like for me personally, I have to do everything I can that's available to me to try to stay on top of this cancer..At least as far as medical treatments go..I am not a risk taker by nature, I never liked roller coasters as a kid even, but Ive been placed in a position to do things I may not always be comfortable with. I just saw RO this week and will get radiation on my L1 and he said I can continue to take Kisqali - I know its different for each person but it may be an option. Good luck on your upcoming scan.
Dancemom, good luck to you on your appointment next week w/ the RO.
Mozuke, I can certainly relate to a lot of what you said, Im sorry you are having a bad week and I hope you are feeling mentally better. Its so hard, isnt it?
As for me-RO will do radiation to my L1..but I have learned so many things since that appointment. This pet showed some uptake in my glenoid and scapula which was not there at my last pet. When I asked my MO if this pet showed any new cancer he said no..The report became avail to me after this call. I saw the reference on the report, but it doesn't say its definitively what those areas are one way or another-Since it was all so close to my clavicle which is know, I stupidly assumed, and made other stupid assumptions that this was either all in the same area and maybe part of the clavicle (which even sounds stupid as I type it-knowing that the clavicle is the clavicle and the scapula is the scapula and they can't be "part of the clavicle")-I had my MO's words in my brain telling me there was no new cancer..I planned to ask my MO about it at my next appointment, etc. So maybe it really isnt cancer. I don't know why my MO said there was no new cancer, I have many questions. Either way-the RO can't just radiate things unknown, so now I will have a MRI of my shoulder. He mentioned it could be occult, said its odd that it wasn't there before but there now, etc etc. He will talk to my MO, take my case to the boards (I learned there are 2 boards, a cancer board and a general board) etc etc. I don't see my MO for another 2 weeks. I don't have many answers, just questions. RO seemed to think after back would be mastectomy, then back to radiation for that. Let the shoulder do what's its going to do, but that was before he ordered the MRI. He mentioned radiating that area of my shoulder particularly the glenoid may cause some other problems and its my right shoulder and of course Im right handed, blah blah blah. The appointment felt muddled some, their computers went down midway through my appointment so he told me he was thinking out loud a lot since he couldn't access parts of my scans after seeing them initially. I don't know. Mentally its been tough. I know this is the disease and lots of ups and downs and in the grand scheme of things this probably doesn't change much if it is cancer..I learned a lot, like I said..I had very different expectations of how this appointment would go and it didn't go the way I thought for 90% of it. Sigh. I've had a pity party for myself for sure since the appointment. I really like both my MO and the RO-so I need to understand how my MO interpreted the pet.
I just need my emotions to catch up with my brain and align again and get back on track..or get on a track.
Hope everyone else is doing well.
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Dear EastcoasttoWestcoast, we do care. First, if your MO said "no new", this is great, and it 99.999% means there's "no new cancer"! Then... Do you have both PET scans yourself? You could go to another radiologist to another center and pay for the 2nd opinion (I know it is a hassle and expensive but sometimes is worth for the piece of mind). Or you could call your MO and he/she would gladly explain what he/she meant with these words, as in your opinion report shows something else? You have to make these doubts go away as it is very stressful, and stress does not help at all. Hope this helps at least a bit, Saulius
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Mozuke -
I'm right there with you on the comments of those who have no clue, and who think this is just a phase, and after our treatments are over - then, we'll be back to normal.
I just saw my breast surgeon last week. In my case, I told her that I'll probably die from the side effects rather than the cancer. She said that a lot of her patients say that. Many of my serious side effects are due to my cancer treatments.
KBL used the term "mind f**k" which says it all. The moment I feel a little bit better, I wonder if if I have a chance...? But no. Come down to earth and listen to people tell me how good I look and how wonderful I appear to be. ⭐🌟✨😀😃😀!!!
Mozuke - I'm not sure you are already on, but join us if you can for the Zoom Monday Zoom meeting, or the Wednesday Zoom. You can listen or talk, and you will meet wonderful women who support each other in the best way. We won't tell you that you look good and things will be better, but we will support your soul (KBL - Is that ok to say?).
- Anna
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Thank you Anna, and others who responded. It is nice to be understood! I did attend the Wed meeting (I'm Maureen!) and that was hard but good. This is such a tough thing.
I had Taxol today and an appt with my onc. She is pleased with the size reduction of my breast tumor. I will have PET scan in a month and if things look good then we will go forward with mastectomy. I will also have ovaries/tubes removed. These were already being discussed and then we got results of genetic testing this week, I’m BRCA1 positive. I've known all along that this was likely to occur, but now that I have appt with surgeon (consult in two weeks) it just makes it all real.
I could go on and on…my mind is such a roller coaster. One day I’m sure I’ll be the outlier, plugging along for years and years, the next I’m sure I’ll blow through treatment after treatment till I’m back in the chemo chair. My dr is so encouraging, but there’s really no way of knowing how my cancer will respond.
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mozuke,
Sorry that you’ve joined us. I’ll repeat what you’ve likely heard before; The beginning of the bc dx and tx are the most difficult. Our doctors are often encouraging, as they should be in most cases, but no one really knows how anyone will respond to tx! When I was dx’ed I guess I really didn’t think about whether I would be an outlier or blow through various treatments quickly. I am pretty lucky to be able to take things one day at a time and that has kept me even keeled. I am definitely an emotional outlier. No crying, no anger, no sleeplessness, etc. I also cannot play the “what if…” game as that is also crazy making for me.
Now that I’m 10 years down the road without any progression, I’m even more chill about it. I have also not had aggressive tx, but did have a collapsed lung after port installation and never ended up having chemo! It seems as if I’m an all around outlier. However the manner in which my situation has unfolded would not have been known initially and I rarely spend time speculating on the unknown. Take care
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Forgive me, I’ve been missing in action today.
Anna, you can say anything you want.
I’m sorry I don’t have any better words to say to you, EastCoasttoWestCoast or Mozuke1. You’ve got great people here giving you support. I have never had radiation or surgery in my breasts, so I would be the last person to give advice. I’m so grateful you have people here who have dealt with these things to give you support.
I remember back when I was first diagnosed. I have it in an organ. There is no way I’m going to be here more than a year or two. Here I am, 3.25 years later and still doing fairly well. I actually had no treatment when it was in my bones and was still here six years later. I am so grateful this cancer is usually slow-growing.
I had a surprise call from my daughter today telling me she had gotten off work early and was wondering if I wanted to go to lunch. I told her after that she put a pep in my step.
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KBL, your pep in your step made me smile
I was venting and not in a good place in my last post - thank you for the thoughts Ditto to you Saulius, I appreciate your response and you are right, the stress isnt good for anyone and the logical side of my brain knows it also won't help anything, just like worry. Its hard to control though especially in the moment. I do have the scans myself, I need to print them and really compare them, its hard in a chart on the computer or app to go back and forth. I do understand each radiologist is going to read the scans slightly different and with different terminology. I want to see my MO and discuss my concerns first..then I will make my next move. MRI is on Super Bowl Sunday. t g
Mozuke, our minds are like roller coaster depending on where we are in our journey. I've learned my lesson the hard way as I need to do sometimes, and even though I mentally prepare for not good news or indefinite news as part of the disease, hearing it still dips my mind and emotions to the bottom. We fighting to live and its a stressful never ending Im learning.
Have a great weekend everyone!
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EastCoasttoWestCoast, I’m glad it made you smile.
Please know even after three years of knowing, my mind still thinks about sad things and that I’m not going to be here. I do think now, though, that my mind is in a better place. I try really hard to appreciate each day, but that doesn’t come easily, especially in the beginning of being diagnosed. You are not alone.
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Mozuke and all of you guys -
Yeah, I would define my life as a roller coaster of emotions. Some days. I feel good of myself, and then the least little thing will throw me off.
I usually don't expect any negative results to my chemo every three weeks, but this last one I was told I needed to take iron and see my gastro. Even though this has happened before, it affected me even though it is such a small thing in the big picture.
Not that this is my only concern, but I have battled some serious side effects during the years until now. I continue to exist with these side effects and have to realize they won't go away any time soon, or at all.
I'm still here and have somewhat learned to weather these ups and downs, but you can rely on this group for support. KBL, exbrnsgrl, eastcoast and the others are here too.
- Anna
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Now I do need support! Is there anyone out there in bc land who has remained even keeled, emotionally, throughout their bc experiences? I feel like a freak!
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Exbrnxgrl, aside from the initial shock and very raredown day, yes. I pretty much live normally even with routine progression of brain mets over the years. There’s nothing I really do to have this state of mind, I attribute this to being mostly stable, naturally optimistic and knowing that several future lines of treatment are still available to me. I’ve always dealt well with stress and have managed to feel good throughout MBC. Currently, I have no needs that aren’t being met, no children to worry about and no family (except DH) to be concerned with about my eventual death, it’s a very free and relaxing place mentally.
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Glad to hear that illimae! I have always felt a bit strange. No hysteria, crying, sleeplessness, etc. I am fortunate enough to be doing well but I didn’t know what my path would be ten years ago and I don’t know what the future holds so I just take it day by day. I do have children and grandchildren. My daughters are in their thirties and I am very proud of the adults they have become. Yes, they love and care about me but they are adults so no worries about “sparing” them worry or grief. They understand the life cycle and know sad things do happen. My grandchildren are young, 9, 5, and 3 are are unaware of my bc mainly because all the initial scary stuff happened before they were born. However, when it does comes up, I will not hesitate to explain it to them in an age appropriate manner. I keep waiting for uncontrollable emotions to overcome me. Still waiting…
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exbrnxgrl, I know I’m a bit prickly these days, but I find your posts insulting. I found out 3 months ago that I, a healthy 49 year old runner, had a terminal illness. I am unlikely to be around long enough to enjoy retirement with my husband and to see our children become established adults. Forgive me for being emotional. I came here looking for support, not to feel as though I shouldn’t need it. You have been quite fortunate, I do not begrudge you that. I have no idea what my future holds and yes, that makes for some sleepless nights for me. To save myself further aggravation I have blocked your posts.
I know I’m new around here, and I’m sorry for bringing drama. Thank you to all who have offered the support and understanding I need right now.
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mozuke,
I am sorry if expressing my personal feeling about my own mbc is insulting to you. I was simply expressing how I feel and what an oddball it makes me feel like. My feelings are just mine and speak to how I feel, no one else. We can accept the feelings of anger, sadness, etc. that folks express on bco. I'm hoping that myself, and possibly others, can be accepted for handling it differently. We are individuals with individual circumstances and I feel like enough of a stage IV freak without you interpreting my post as insulting because it doesn't coincide with your feelings. If i was not clear that i was expressing my personal feeling about my particular situation let me be clear; I feel like the odd woman out and that has nothing to do with how anyone else feels. I have felt this way since day 1 when I had no idea that I would do this well and how I feel has nothing to do with anyone else's feelings. I had a career and family too and no way to know how things would go. Most of us have personal lives that have been forever altered by bc. Iwas healthy too but doesn't necessarily mean much in terms of cancer. I wish you well.
I know this is the de novo thread, and I was de novo, but after 10 years without progression I guess there's only a limited place for me here. Sorry that my emotions are insulting to others and not acceptable. Sorry again. Take care, from the unacceptable freak.
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MBC is different for all of us and reactions to dealing with it vary so much by current status, personality type, length of time living with it, etc.
We’re all free to speak our minds and I believe there is plenty of support to go around, whether you’re currently struggling or have been lucky enough to find normalcy despite the threat.
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Thank you, mae. I have always felt completely out of place on bco (yes, really, even after 10 years) when it comes to the emotional aspects of dealing with mbc. I felt this way from the beginning when I had no earthly idea about how the future would turn out so it has little to do with my longevity. I have never expressed nor implied that anyone else could/should feel as I do, yet I often feel “less than” because my emotional reactions to mbc are not typical.
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amontro, since it seems you’re having the same issue with low iron that I am and I notice you’re also on Herceptin and Perjeta, I decided to consult Dr Google and see if this is a possible side effect of Herceptin. Looks like it is. Hate having to have more appointments and procedures for this if it’s probably unavoidable
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3360911/Results.
The addition of targeted therapies to standard treatment (chemotherapy or placebo/best supportive care) increased the risk for all grades of anemia by 7%. The RR for all grades (incidence, 44%) and grades 1–2 (incidence, 38.9%) of anemia was higher with biological therapies alone but not when combined with chemotherapy. The risk was significant for erlotinib, trastuzumab, and sunitinib. Bevacizumab was associated with a lower risk for anemia.
“Conclusion.
Grade 1–2 anemia is frequently associated with biological agents. The risk is particularly associated with small-molecule tyrosine kinase inhibitors (gefitinib and erlotinib), breast cancer, and lung cancer. Erythropoiesis-stimulating agents are not labeled for use with targeted therapies (without chemotherapy) and the treatment is supportive only.”
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exbrnxgrl, I'm not de novo, but I'd like to say:
1. I love your forum name
2. I love your avatar (I'm a knitter)
3. I appreciate your posts
4. I'm sorry you feel like an oddball. I would never have guessed that about you.
5. You are very much valued here.(((hugs)))
Carol
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I’m blushing, Carol! Thank you so much. Yes, I appear and conduct myself through life in a fairly conventional manner but I do often look at life differently from others. I often suspect I’m low on the Asperger’s spectrum. Heck, I don’t even remotely look like an mbc patient and people have sometimes been dismissive of my mbc because of that and my no panic attitude. That’s just me and I fully understand that each of us have our own feelings.
Yes, even after 33 years in CA, I have the soul of the Bronx girl that I am. My knitting has been somewhat curtailed due to arthritis and AI induced pain. I learned to knit English, switched to continental and even learned Portuguese style with a knitting pin. Portuguese is the easiest on my hands/wrist but I need to practice more. Thank you for the comfort that I really needed today. Have a wonderful wee.
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