Best Of
Re: Halaven - Day 1
Another bump, for anyone on Halaven/eribulin now or in the future. Two hospital stays in April meant I only got one shot of this new (for me) chemo before developing neutropenic fever. The 2nd IV injection was delayed by weeks.
Despite those setbacks, it’s been tolerated well at a reduced dose. More significantly, my tumor marker dropped from over 200 earlier this spring to 75 last month and now 55. In addition, MRI showed shrinkage of liver lesions without more developing.
Having been heavily treated, I don’t have many options left. Once this fails, I can try vinorelbine. This summer is a kind of respite since there won’t be additional imaging for a couple months. I don’t have as much energy as in the past however I’m also not getting any younger!
vlnrph
Re: How are people with liver mets doing?
Getting that dreaded liver biopsy tomorrow. Trying to think about the more relatively positive experiences some of you have described previously in this thread and hoping for same. Also dreading that once this is done, my oncologist will move on to the discussions of how to treat what's there. None of those options like Y-90, thermal ablation, or histotripsy type things sound like anything I want to go through either. I've just been coasting on this Verzenio, Fulvestrant, and Zometa for a little over two years now, and am pretty freaky that the apple cart has been disturbed. I want to just keep chugging along like I have been for the next few years at least, as some have been able to do, but it looks like that's not in the cards for me.
Re: I was just now dx with skin mets
Hello - I just found this site and this skin mets thread. I have metastatic breast cancer (bones) but also history of melanoma and interesting to read here that skin can be a metastisis site, also. Thank you for this info, I will be following. I have my 6-month skin survey tomorrow and will bring this up with my dermo PA. I hope everyone is doing well. It is definitely a challenge. Thank you for sharing - very helpful to me.
tbos805
Re: My Husband, My Life, My Love, My Family, My Cancer
@intolight - Thank you so very much. It's nice to hear that you are glad you did yours, because I know yours wasn't a real easy one to say the least. It's that information you mentioned that my onc is so interested in getting. He's been "encouraging" me to do this now for the last 3-4 months, and I have just been too darn scared, but will brave it as best I can tomorrow. At least he said that we have time and there's nothing urgent at this point. He just wants to get a handle on everything and get a game plan in place for if and when the next scans show something that we have to jump on. Things have been relatively slow growing and steady for a few months now.
@chicagoan - I really appreciate your comments, thank you. I wish I could just close my eyes and then not worry about the needles and knives, but I get all freaked out way ahead of the needles and knives. I now some get anti anxiety meds beforehand, but I haven't asked for anything like that. I'll just take it as it comes - and I too don't look at any of the needles and knives, but just knowing they're involved and that there can be complications, I just won't be able to relax until it's all over and I hear that if went fine. When I get scans I am very slightly claustrophobic and then just closing my eyes can really help and make all the difference, but not with this. I guess there is some just invaluable information that they get from these and I hadn't known it was so much before. I thought it was basically for confirmation purposes and so far every doctor that's looked at the scans is absolutely convinced that what they are seeing is cancer, but I guess there's far more to it than just that confirmation.
I'm just feeling sorry for myself today, and don't know how to get out of that kind of a hole. I know it's not good for a person. I did have a nice distraction this morning with a long drive to a not nearby store, and I got enough stuff that I can just hang out here at home for a few days after the procedure without having to go get anything, in case I wind up super tired or something. It's real pretty here today too, so the nice views of the water and mountains helped too. I also helped my brother order some groceries for delivery to him and that was also a nice thing to help get my mind off all of this. I felt like I was still useful and helpful to someone else. That's always a plus.
Re: My Husband, My Life, My Love, My Family, My Cancer
Good morning to all - wishing everyone a wonderful day and good week ahead.
I'm gearing up for my liver biopsy tomorrow. I remain terrified, as I am such a big baby when needles and knives are involved. Just going to take it each bit at a time now until it's all over. My good old childhood friend is going to serve as my escort and that's a real plus. Now if the procedure will just go smoothly and painlessly and return a benign result (yeah, right), all will be well. Ugh!
Re: KISQALI
Others can correct me if I'm wrong, but I believe the cutoff for white blood cell count is 1.0 before they will either hold the Kisqali for an additional week or contemplate a dose reduction. My wife hovers just over that 1.0 threshold and has since she started on Kisqali right about 2 years ago now. She was under once early on in her therapy and they withheld it for an extra weeks to let her counts recover. Those persistent low counts have not appeared to have any adverse consequences (no recurring or more frequent sicknesses or infection or anything). Kisqali suppresses some normal cell function too in addition to suppressing cancer. So that is why low white blood cells is one of, if not the most, common side effect. The good news is that even if they have to lower you dose because you are chronically below the threshold, the results from the lower doses seems to be as effective as the results from the higher doses.
Others can also chime in on ways to "artificially" increase you white blood cell count right before your blood is drawn too so you don't have to worry as much about being under the line. Some vigorous exercise shortly before the blood draw, and eating dark chocolate are apparently two pretty reliable ways to give it a boost.
Hope that helps.
bighubs
Re: Abemaciclib Verzenio for Stage IV
I’m off Verzenio & Xgeva temporarily while on the Amoxicillin and I thought I would feel better, but I did have the Fasoldex injection last week and I really feel like crap anyway. Very Tired, low mood, lots of bone pain and weakness going upstairs. Over the past weekend on Saturday we went to a big neighborhood BBQ and pig roast. Everyone brings a dish, I brought 3 trays of spaghetti & white clam sauce. So my sweet neighbor set up the tables and reserved. One under a tent forme and some Others with medical issues. We laughed and said this table is resererved for the informed. We had a nice time but I just can’t sit for more than 2 hours withought being in pain in my spine and hips, and seatbones, where all my mets are. So we ended up leaving a little early.
Re: Can we have a forum for "older" people with bc?
This must be the day for mistakes…I put too much down the disposal last night and, yep you guessed it, the sink stopped up and overflowed underneath—my fault. My DH was still at the gym so I had to unstop, empty, and clean underneath the sink by myself. I got it done and it runs smoothly now—I hope. I am exhausted since I had to bend and get down on my knees. I had plans to do other things today but I can usually only do one big activity a day. When my DH got home, before I had it all finished and sanitized, he put the air sanitizer nearby for the smell. He has bad knees so I knew he wouldn't do it. Oh well, at least that helped.
Re: My Husband, My Life, My Love, My Family, My Cancer
@candy I am so very sorry to hear the news of your sweet friend. I think sometimes news isn't relayed properly and you are left guessing what truly happened. Thinking about @exbronx girl, she stayed on top of her bone met for years and yet between scans things changed rapidly. @cookie Oh what good news on your scans. This build up and anxiety is so much. Sometimes I wish I could drink my worries away. That would require one beer. lol. @shanagirl You hang in there gal. This next month will pass quickly and I just know you will find good relief. @mara You amaze me the amount of work you complete in just a day. Can't find the energy to stand too long in one place and cook. We found a delivery service called "Factor". Dietician approved meals and we have not been disappointed even in one meal we have selected. It's not the most expensive delivery of fresh cooked, never frozen, but it's not the most reasonable either. We started the program 3 months ago. The salmon is one of my favorite, followed by Turkey. We splurge one week out of the month for truffled mushrooms over filet mignon. It is very good. That one has fresh carrots.
Well I only have one more horse pill for the diverticulitis to go. I split the time off Ibrance by 5 off at diagnosis and back on after that. I worry about being off too long, but somewhere I read that the Fulvestrent is the critical part of the combo. I just can't heal diverticulitis without a heavy antibiotics. It's like playing whack-a-mole. @intothelight and @threetop and anyone that I may have missed, you are in my thoughts and prayers, too. Much love and in pockets for all your needs.
Re: Mucinous Carcinoma of the breast
Hey sisters! I'm back and so is my breast cancer after 15 years. Yep! A "morphologically comparable" 6mm tumor to the 1.6 cm tumor that I had 15 years ago. So here is the short version. Reviewing the tumor from 2010, it turns out that I didn't have pure mucinous BC. Instead, according to MSK, it was pure mucinous BC with micropapillary features. And that Grade 1? It was a Grade 2. Interestingly, I had the 2010 slides also reviewed by a third pathologist who concurred with MSK after they looked at it a SECOND time. Oh, well. And the new tumor? Well, it is no longer classified as pure mucinous with micropapillary features. It is now, IDC with mucinous features.
So, what does this all mean? Well, it could take days for me to bring all of you sisters up to speed. The only thing I can say is that according to the wonderful MSK pathologist, whom I have known since my journey began, has told me that there are too many gaps at this time to say with any certainty whether or not this recurrence is more or less aggressive than the original tumor. Both of us looked up what little literature there was and it appears there is lacking consensus even on how much micropapillary features a tumor must have before it is even classified as pure mucinous with micropapillary features! She and her MSK colleagues have even written a paper on pure mucinous with micropapillary features. Having a recurrence without those features? No data reported. Furthermore, when micropapillary features are present, there is a higher incidence of LVI and positive lymph nodes. In my case, both negative. The only more aggressive feature in the recurrence is that it is now PR negative. But, it also went from 90% ER positive to 100% ER positive. Go figure. Both tumors were described as well circumscribed and glistening. So, on gross examination they are comparable and retain somewhat of the favorable mucinous characteristics.
With all of that said, my two medical oncologists are cautiously optimistic. One said, don't rack your brains out looking for treatment and prognosis because you won't find any data. But, he also said that I still had one of the better cancers. Second medical oncologist said not to worry about the PR negative because the 6mm makes it unlikely to go rogue. Okay. Last time, I did 8 years of endocrine therapy and three years of ovarian suppression because at age 53 I was premenopausal. Also did 6 Zometa infusions. Quit endocrine therapy at 8 years because the BCI index score came back low risk and I wouldn't benefit from further therapy. Discussed the ESR1 mutation. Very unlikely because recurrence occurred 7 years following discontinuing endocrine therapy. First tumor, Oncotype DX score 15. Low risk and chemo would have been more harmful than beneficial.
So, had double mastectomy with implants and now embarking on many more years of endocrine therapy depending on what the future data says and the future holds….
I delayed sharing this news for 6 months while I gathered as much details as I could provide.. I wanted to first get from my pathologists and medical oncologists as much info as possible so I could pass it along to all of you. I wish my team could have given me more solid evidence to help me make as best of an informed decision as possible. Unfortunately, this case, which happens to be my case, is an outlier in the annals of mucinous breast cancer. So, if you have any questions, you might want to ask AI first for some answers. Believe me, AI helped me a great deal, but only up to a point. So be my guest…feel free to find answers to your questions from AI because if you ask ME any questions, I would probably refer you to AI….
Oh… last point…My first tumor was misdiagnosed as a benign cyst for THREE years before a second radiologist pinpointed it and said he was going to biopsy that sucker. He has been on my team for the last 15 years and was a PIT BULL. I am so grateful to him and he has promised me he isn't retiring anytime soon and will continue doing annual sonograms especially since both tumors were deep inside at the 5 o'clock position. Never palpable.
I feel so blessed. Here I am now. My kids grown. Grandkids. I will repeat what I have said from the beginning of my journey, for many of us breast cancer is a treatable disease. When I began my journey HER2 positive treatments were just evolving. Today, with all the treatments available, mortality rates have improved to the point that they are coming close to those with ER positive disease. My wish has always been that we find better treatments and a dare I say a CURE especially for those younger patients who are more often than not diagnosed with more aggressive tumors.
I wish all of our sisters, young and old long lives! And for those who have passed, whose journeys coincided with mine, I continue to think of them and how they have affected my life and I will remain grateful for having known them as well.
Carpe Diem!