Best Of
Re: Taxotere vs. 12 Weekly vs. 4 Biweekly Taxol: Advice from Those Who’ve Been There?
Hi Tilda!
I'd done the 4 dose-dense Taxol, after completing 4 AC. I think AC is similar to EC, it was a REALLY tough regimen. I also had the fatigue and brain fog that you mention, and constant low-grade nausea, and after going through that, I just couldn't handle the thought of 12 more chemos week after week, so I went for the 4 bi-weekly option.
Everyone reacts differently, but for me, the 4 Taxols were much easier to tolerate than the AC. With the taxol, the main thing I noticed was nail color changes, itchy skin (if I had sun exposure - it was summer when I did the Taxol), and BONE PAIN especially after I had the Neulasta injection to boost WBC. The bone pain was pretty bad (knees, back and shoulders felt like I'd been beaten up), but it only lasted for about 2 days, and subsequent infusions and injections were more tolerable. I had zero bone pain by the 4th infusion. Daily Claritin, and daily exercise made a huge difference in lessening the bone pain. I used cold mitts and booties to prevent neuropathy, but I still developed occasional tingling in my fingertips, very minor though.
I'd asked my oncologist about the difference between 4 dose-dense and 12 weekly Taxol. My team said the dose-dense is more effective against aggressive breast cancer, and the week off between infusions allows patients some recovery break, but at the same time some patients have slightly stronger reactions because of the higher chemo dose. They actually observed more neuropathy and steroid-related complaints in the patients who did the 12-weekly regimen because that meant the body was on the chemo drugs for an extra month duration.
My oncologist said I always had the option of switching to the 12 weekly if I couldn't tolerate the dose-dense version, but everything turned out ok and I was glad to be finished a month sooner.
ammie
Re: how about drinking?
Good Morning, Loungettes! Happy Thirsty Thursday! Mom and I are home from North Carolina, and we are both exhausted. The trip itself was pretty good but has made it pretty clear to me that another trip with Mom is going to require a second caretaker to go along with. The first night at the hotel, after a long discussion about her not using the shower at the hotel since it was a tub/shower just like she has and cannot use at home, at 2 ayem she gets up to take a shower, falls trying to get into the tub, and whacks the back of her head. No real injury, just a bit of a bump, and I was able to get her back up and out of the tub myself. After that I woke up every time she started to get out of bed, which turned out to be 3 or 4 times, every single night except the last night, when she was getting up almost every 2 hours thinking it was time to get up and head for the airport. I got her home and got her settled (thank the Good Lord for grocery delivery services!) and got home myself 8 peeyem, sat down on the chaise and passed out, woke up an hour later, went to bed, and tossed and turned all night until time to get up and pick up the puppers. Brought the puppers home, cuddled and napped for a couple hours, then went and picked up Mom for her doctor's appointment, which was a horrific experience itself.
Mom's primary doc referred her to a hematologist because her platelet count was high while she was in the hospital for the gall bladder episode. Had an appointment in August, had blood drawn, was told she was anemic and started on iron and B12. I got a robotic voice call a couple weeks after that stating she had an appointment on Oct 22 that she needed to arrive at 2:15 pm for. No indication what it was about, couldn't get through the phone tree to a real person who could actually answer a question. Got another robotic reminder call while were in NC, same info, arrive no later than 2:15 pm. So, we arrive, check in by 2:15 pm, the person at the registration desk mentioned we were quite early for a 2:40 appointment. Huh? I was told she had to be here by 2:15, why so early? Registration person had no idea. So, upstairs we go and sit and wait. At 2:45 I go to the desk and ask what's up, how much longer is the wait going to be, trying to decide if I was going to take her home as she was getting really uncomfortable in the wheelchair and very tired. The lady at the desk says it’s a follow up appointment with a Nurse Practitioner that I've never heard of and they are waiting for the blood test results. I told her that the last blood test was in August and they had those results. Come to find out, Mom was supposed to get blood drawn before the appointment, but it wasn't showing up, until the lady finds the order for blood work for Oct 23rd! I had a mini-meltdown right there at the desk. The desk lady is very kind to me, gets a complaint form, calls the office manager and will talk to the Patient Advocate when she gets off the phone. I go back to mom and start to ask her if she wants to stay or go home when the tech comes out to get her. I decide that it's time to really make some noise, so we take Mom back, go through the whole story again, discover that there isn't much the NP can tell us without the blood test results, and I ask how to file a formal complaint. The tech says I have to talk with the NP about that (which I know is not true, but more time it's documented that a complaint is made, the more likely it is to get paid attention to and I was working on making a point that couldn't be swept under the rug, which is this hospital system's specialty). So in comes the NP, again with the whole story, plus my stated expectation that she is going to do something about it, and that I expect her to give me a way to reach a live person in the office when I call with questions or arrange transfer of care to another system (magic words for making sure to get attention from the people high enough up the hospital system food chain to actually do something about a problem). So now I have a direct line phone number to the back office phone, and a name of the nurse to ask for. I leave a written complaint on the way out to go downstairs and get Mom's blood drawn, and get a Patient Experience phone number to file a formal complaint. Which is the first call on my long list of phone calls to make today to get Mom's move started. Needless to say, I was so frustrated and angry, and still am. And Mom is upset because I still can't tell her what the problem is or what the plan is or what is going to happen next--and the NP talked about taking a chemo drug which wound mom up big time. And the NP said she is NOT anemic, just iron deficient. So who the hell knows what is really going on?
Sorry to dump all this on you guys, thanks for listening and I will be fine once I get this phone call made and a second cup of coffee.
Jazzy--congrats on the fully opened new hospital! It must be exciting to be in planning stages for the next chapter. Yoga teacher training sounds amazing! Yup, got lots going on with a goal of getting Mom out of the current apartment by Nov 1st so she doesn't have to pay another month's rent on that one. It's going to take some organizing, but it can be done. I swore up and down that the next time Mom needed to move I was going to make my brother and his wife take care of it all, and I really, really wish I could do that, but it's not an option.
Morning, Carole!
Misty--the visit was good, even if my brother did get sick in the middle of it! I'm not sure he realizes that this is probably the last time he and Mom will see each other, but Mom sure does. My mom likes the old music too I hope your mom will find a senior place to move to, there are a lot of advantages plus more contact with people her own age. So good of you to spend time with your friend. Lots of times people avoid someone with a diagnosis like that. Good for you for trying out new drinks! And I think it's fair to call yourself not much of a drinker when you are drinking WIND!
Jazzy--turning in that resignation will probably feel pretty exciting! Good for you for getting some vacay time, too.
Minus--I think all PCPs are required to say exercise more and drink less in order for insurance to pay for the visit!
Whiskey and Frustration
2 oz Rye, Rittenhouse 100
2 ds Fernet Branca
2 dr Eucalyptus tincture
4 dr Bitters, Fee Brothers Rhubarb
1 rinse Scotch, Bowmore
Instructions
Combine first four ingredients in mixing glass, no ice. Rinse old-fashioned glass with Bowmore, depositing excess into mouth. Pour educated rye into center of glass.
From
Re: Are you currently (or have you been) in a Clinical Trial?
An exciting new finding came out this week from the ESMO oncology conference in Berlin! It is detailed in a new Nature publication which reports that the Covid vaccine very strongly enhances the effects of immunotherapy. They did a retrospective analysis of a large number of patients with metastatic melanoma or lung cancer and found that, for both cohorts, those who got the Covid vaccine either while taking immunotherapy or within 100 days of starting the treatment had an overall average survival of 37.3 months, compared to just 20.6 months for those who did not get the vaccine. Its hard for drug companies to show any overall survival advantage for drugs, let alone one so huge. And remarkably, they also got strong hints that adding a Covid vaccine might make cancers that are normally resistant to immunotherapy become sensitive to it (!!!), in part because the vaccine increases PDL1 levels in addition to activating macrophages and dendritic cells. The finding is based on earlier studies that mRNA is what stimulates the immune system, so traditional DNA-based vaccines would not have the same effect as the Covid vaccines. A phase 3 trial has just been started to see if Covid vaccines should be included in standard immunotherapy protocols:
The paper:
A great summary from the researchers:
Re: My Husband, My Life, My Love, My Family, My Cancer
@micmel Oh I love that Theo! He is truly living a happy life by his little smile.
@mara51506 Ugh sorry you had belly upset yesterday and had to reschedule. Hope you're feeling better today. In your pocket for getting some mental relief with stable MRI results, fingers crossed.
@candy-678 Ugh this cancer crap and all the lovely SE can really wear a girl down. I'm sorry that your sister has no clue of your world and your feelings. It is so hard to sit back some days and watch or listen to other peoples "normal" world. I'm sure you think as I often do what would I feel like in my 50's in my old body? It crosses my mind then I have to let it go because that's not my reality. We get you and we are always here to listen! Big hugs♥️
@mkestrel Sorry about mixed results, hoping you can wait a bit and see before you change treatment. Either way cancer stinks and I'm waving my magic wand in the air for all here that are on this freaking roller coaster! Hugs.
Doing ok here been busy with getting mil house on the market. Also started the process of looking for a dress for my DD wedding in May. Oh what a job that is…lol Hoping to maintain stable through then and praying I have super strength to get through all the planning etc. Oh how I also miss my super sharp mind I had before all these drugs!
Hi to all here wishing everyone a good day!❣️
cookie54
Re: Side effects from aromatase inhibitor other than joint pain.
I'm so sorry your cancer came back. Hopefully this time they will find a way to help you. When I tried asking my oncologist about the gastro issues, heartburn, belching, etc. he said Anastrozole didn't cause it. I had to do my own research. While the menopause-like issues and joint pain are difficult and potentially even more harmful the longer you take this stuff I'm just really concerned that they don't mention or are even aware about some of the other SE. Seems like they just throw stuff at you and don't give you any real info. I started radiation treatments this week and, although everyone is very nice, I just feel like a piece of meat during the process. I wish they would remember we are not just breast but people with a whole body we have to be concerned about.
july31
Re: Side effects from aromatase inhibitor other than joint pain.
Hi @july31
Thx for posting this new SE thread on anastrozole. The lab is calling me in for tests, but I think it's for a baseline before Verzenio.
I will watch for elevated glucose and potassium.
I started anastrozole last week, and have hot flashes and night sweats already; the shakes. Alot of "gas" and biiiig belches,too.
(sigh) it's really frustrating, because when first dxd in October 2019, after surgery and radiation, I made it only into mid 2020 with the letrozole, then exemestane (severe allergic reaction after three days). I moved, got a new oncologist, was on tamoxifen and got SE from that! It would have been nice, had I have been able to stay on them as directed because in my case, BC came back as stage 4, I just learned, this past month. But who knows, it might not have made any difference at all. There are sooo many stories!Thank you again for your information. It's made me realize that in the least, I should go and ask the pharmacy for a "drug sheet" on this medicine.
Take care, and please keep keep us posted.
Re: My Husband, My Life, My Love, My Family, My Cancer
@mkestrel So sorry to read about your mixed results. I also question the rapid medicine changes and what they really mean. I think I am on my last oral med with Orserdu. I will get my next scan sometime in late November so we shall see how it goes. I am not sure whether I want IV chemo after all I have been through, and I have not had the surgeries and radiation that you have had. I have never had IV chemo. It's so much to think through. My daughter asked the question " what will it gain me?" She is right. This managing cancer stuff is getting old!
Re: My Husband, My Life, My Love, My Family, My Cancer
CT showed a new lesion in the liver but the other two were smaller .. I guess I'll find out Monday if I have to change treatment or what. Kind of discouraged 😕 i know reality of it all but i was hoping to stay stable longer. The ctDNA nosedived after starting Enhertu from 95 to 0.5. now inching up again. Is slow progression really treatment failure though? None of them are cures. I'm tired of changing treatment. I'm also worried about running out of treatment options. I know that happens eventually and it not a good feeling. $&#& cancer ruining everything
In other news, I am attempting to make Tabasco sauce out of some of my peppers. Apparently you let them ferment in salt water for a week and then blend with vinegar. Anyway, a fun project. I need to start more distracting projects and somehow stop thinking about cancer 24/7. I hate it taking over my life.
mkestrel
Re: Radiation recovery
Good morning April,
I am in your pocket this morning too. I was the one who asked if your mother named you April because you were born in April. I hope that after you have the ct scan, tatooing and simulation you will think that it is a cake walk too. As for me staying at THAT hospital overnight for my lung biopsy I refuse to do it. I emailed my doctor last night and told him to find out if an imaging place near me can do it without an overnight stay, or if UCLA Westwood would do it without an overnight stay, of if he could find a pulmonologist from St, John's hospital to do it. I would be willing to stay at St. Johns overnight. He will have to semd an order and scan to the new place, so it looks like I will be in limbo till this gets set up somewhere else. Good luck today Hugs, Kate
Re: Radiation recovery
Hi everyone,I've been off the thread for a few days so I'm trying to catch up.We had 12.5 inches of snow on Sunday.It's mostly melted already though.Kate glad to hear your hanging in there.
BUNKIE I'll be thinking of you next week.
April congrats on the shortened Rads.
My nipple is becoming inverted due to Rads .I asked to see the Doctor today because it's getting a little white film in the crevices of my nipple .The skin seems to be a little raw too.The nurse of course had to intercede first though and told me to use a nipple shield and coat it with this cream.I never got to see the Doc .Kind of made me mad I didn't ask to see the darned nurse.
josie123