Ibrance (Palbociclib)
Comments
-
Hi Kattysmith,
Yeah I know. I used to think the same thing. But in addition to Medical Oncologists there are Radiation Oncologists and Surgical Oncologists. There are also Pediatric Oncologists, Hematologist Oncologists and Gynecologic Oncologists.
Cathy
0 -
Hi, Cathy...I know ...that's why I put "It's a joke." I'm no newbie to cancer, just these boards.
0 -
Oops, sorry Kattysmith!!
0 -
... and, may I add Orthopedic Oncologists (OO) lol
Diane
0 -
Hi all,
Do most of you all take a multi vitamin? If yes, is there one you recommend?
Thanks
Bonnie
0 -
Hi Singlemom! I take the multivitamins at Trader Joes plus a C and D supplement. They seem to help. Also Arnica for bruising, since I bruise easier now. How are you doing lately?
0 -
Thanks Lalady! I am doing ok. The ibrance is working very nicely! Lymph node is lung show no evidence of disease. Nodules remain stable but onc is questioning if they are even cancer as they were too difficult to get to in order to biopsy.
It is an upsetting evening as I just learned that a co- worker of mine is doing very poorly. She was diagnosed with her breast cancer reoccurrence right before me. She did not want to do chemo and went to Mexico for alternative tx. I know she was not hormone positive but no other details. I was just talking with her about 5 months ago and she was feeling good at the time. I just know there was a post asking for prayers for her and that she is not taking phone calls or texts. Feeling emotional.
0 -
Singlemom, I'm so sorry to hear about your friend who is not doing well. I remember someone here saying to stay away from Mexico for treatment. It is not a good place to go to. I also have a friend who has a rare terminal cancer and it is so hard to think about losing her. There are so many sad stories in this disease.
However, I'm glad to hear you are doing well on Ibrance. Every positive story gives me hope for lots more years to live.
On a completely different note, I'm wondering if anyone here has just taken a few days off Ibrance in order to feel better for a bit. I'm on my 3rd week of cycle #11 and this Thanksgiving holiday I felt very tired even though I only baked a couple of things and we went to our daughter'shouse for the day. Christmas week will be the same time frame only with more to do. I'm thinking of stopping the Ibrance 2-3 days before Christmas and then starting up again the day after. I'd just like to be able to enjoy the holiday without the fatigue. Has anyone ever done that? I'm going to ask my MO when I see him on Dec. 8th. I'll let you know his answer.
Enjoy the rest of the weekend everyone.
Hugs, Faith (in the future)
0 -
Faith - I've taken an extra week off 2 times over 10 cycles. Once because the side effects got insane... my skin was paper thin and my hands hurt so much I couldn't type. Took an extra week off. That side effect never came back. The second time I was going to spend a couple weeks with my brother in Canada this summer. I didn't want to deal with the fatigue so I took extra week off during the vacation.
However, I wouldn't just stop for 2 days at some random point in the cycle and then go back on. My understanding is that, you want to stay on Ibrance for at least 2 weeks continuously. You could tweak your schedule so that the break falls when you need it, either after a shortened cycle (ie 2 week cycle) or because you lengthened the break to 2 weeks. Either approach will lower the amount of drugs in your system and decrease side effects during the holidays
I can never miss an opportunity to pitch the benefits of exercise to reduce fatigue.
High Intensity Interval Training was Most Effective in Relieving Fatigue in Cancer Patients
Those who performed HIIT three times a week for eight weeks experienced a significant decrease in their fatigue levels. Meanwhile, those performing moderate intensity continuous exercise, experienced consistently high levels of fatigue. Previous medical advice for cancer survivors has focused on low-to-moderate intensity physical activity.
HIIT exercise sessions generally consist of a warm up period, then several repetitions of high-intensity exercise separated by medium intensity exercise for recovery, then a cool down period. The high-intensity exercise should be done at near maximum cardio intensity. The medium exercise should be about 50% intensity.
Depending on one's level of cardiovascular development, the moderate-level intensity can be as slow as walking.[4] A common formula involves a 2:1 ratio of work to recovery periods, for example, 30–40 seconds of hard sprinting alternated with 15–20 seconds of jogging or walking.
How about heading to the track for some sprint drills? Seriously, a walk can do wonders to clear the metabolites that are causing the malaise. If you throw a short jog in here and there, fantastic. And if you want to call that HIIT, you have my full support.
>Z<
0 -
Faith, I recently asked my UCLA onc about safety precautions for a cruise we were planning on doing in January but have since cancelled, and she actually suggested stopping Ibrance a week before the cruise, to give my counts a chance to rebound. We also meet family every year in Las Vegas for the NFR, and twice in recent years I've gotten really sick while we were there. So this year I'm going to stop my Ibrance 5 days early, as well as double up on a preventative supplement that contains echinacea, zinc, and some other immune bolstering stuff. The one way my onc's instructions maybe differ from what you're suggesting is, she said when you stop, just wait and restart the next cycle. Don't stop and restart within the same cycle. Likewise, if you're at the start of your cycle, just wait and start it a bit later, rather than starting for a few days and stopping.
Also my "normal" time between cycles is 10 days to 2 weeks every cycle, and so far, so good.
0 -
Faith, I had my onc's blessing to take an extra week off leading up to and including an important weekend-long event. I started the next cycle on my usual day of the week when that event was over. That gave me two weeks off instead of one, with the event near the end of that break. For me to feel less tired, I need to be off at least a week. Stopping only a few days before would not put me in the feeling good zone for the event.
0 -
Singlemom, I'm sorry to hear your co-worker is not doing well. It is hard to watch someone make a choice that appears so unwise.
To answer your question about a multi-vitamin, my own philosophy is that if I focus on getting what I need from a really good diet, I am likely to get what I need in the right amounts and proportions, without unintended consequences. I know there are others who are in favor of vitamin supplements. (I do take D3, which is actually not a vitamin anyway.)
0 -
Singlemom, I'm so sorry to hear about your friend and co-worker. Let's hope that she is being kept comfortable and well-cared for, no matter what is going on.
0 -
Faith, after fracturing my ankle I asked my NP at UCLA if I could stop Ibrance for a few days as every cycle causes me yo have diarrhea and vomiting and I simply could not get to the bathroom in time on crutches. NP said I could stop for 4 days but not to stop the Letrozole. Hope this helps you make the right decision that works for you.0
-
Singlemom, I am sorry that your friend is not doing well and has chosen not to receive messages now. I understand how upsetting it is for you. We each have to choose our own paths with this disease. It is sometimes easy to second-guess ourselves or others when things don't go as well as hoped. I do hope that your friend is getting the care she needs and is comfortable and surrounded by the people who are most dear to her.
I received a questionnaire yesterday from Pfizer's US Drug Safety Unit. They were asking for information about my low blood counts that had been reported to them. I assume that my MO submitted the report since I did not. In addition to other information, they requested drug lot number and UDI number. Since I am not in the habit of collecting empty Ibrance bottles, I had to leave those fields blank, but it made me think that they must track trends by batch among other things. I thought it was interesting to learn that they are still tracking these SE outside of clinical trials.
I am on cycle 3 now, my second cycle at 100 mg dose. This is day 11 and I feel pretty darn good.
Lynne
0 -
Thank you all so much for your replies. I know that even moderate exercise helps with my fatigue and I'm afraid I neglected it in the run up to Thanksgiving. In the next cycle I will be at the end of 2 weeks on Dec. 20th. That might give me a chance to rebound a bit if I also make time to exercise. That's the hard part. One reason I'd like to feel better is that I sing in our amazing church choir and the Christmas Eve service is beautiful but exhausting even when I feel good.
I'm glad to know your thoughts about just waiting to resume the next cycle instead of starting where I left off. I'm going to talk to my onc next week but I think he will agree since I did do that this summer on vacation. That time however, I was just ending the third week a little early. Sure does make a difference though.
Thanks again everyone,
Faith ( in the future).
0 -
Thank you Faith, Shetland pony,kattysmith and Lynne. I tried to encourage her at first to consider chemo with the alternative but she was so strong on refusing the chemo that I had to make peace with this being her journey and her decisions. I am just very sad for her.
Faith my onc also was in support of me taking a break from the ibrance for a few days when I went on a cruise.
I have noticed that I am continuing to lose more hair especially on the sides. It is so thin at this point that I am thinking of cutting more off and just having very short hair. It is either this or extensions as it can't remain the way it is. How are other people doing with their hair?
0 -
Singlemom, I am losing more hair all the time. It has slowed somewhat but it has become very thin. I think the strands themselves are much thinner than ever. It looks like my thick hair is a thing of the past. I'm taking 10mg of Biotin daily which may or may not be helping. I keep it cut short and I have it colored which adds some body. When I mention it to my MO, his suggestion is rogain but I think that is not worth it since if you stop, the hair falls out again. I keep hoping it will still get better.
Hugs, Faith (in the future
0 -
Singlemom1 - my hair has thinned a lot. Mostly on the top. It is still only noticeable to me and my hairstylist. I keep hoping it will slow down and even stop falling out. My oncologist assures me it won't get to the point where I look sick but it's hard to believe her. I've been getting my hair cut a little shorter each month and changed the way I style it to hide the thinning. I've got a bob just below my chin now and I do color my hair. Fortunately it can still look healthy and shiny but it is definitely different from what I am used to. I have been looking at wigs online quite a bit lately. I have also looked at the halos and top pieces that LaLady has talked about. I'm not ready for either one of those options yet but I am doing my research to get prepared. My biggest fear right now is that I don't want to start looking sick. Once your appearance changes people start looking at you differently and then they start treating you differently. I'm hoping I won't have to face that fear for a very long time...
0 -
Hi Singlemom,
I lost my hair during AC treatments which ended late January and I bought a wig and scarves. This wig was saucy and cute; I called her "Coco," but wore it only so people wouldn't invade my privacy in public. Losing my hair was harder than I thought it would be, but what really bothered me was the loss of lashes and brows. I began Ibrance/Letrozole in February and I want to say that by July my hair was back to normal and I have re-grown my lashes. My brows are still pretty sparse. My hair had really started to thin over the past five years or so with age anyway (I'm 64), but it was always very thick and frizzy, so thinning was actually a plus for me- hair care wise. My hair retained its texture (still curly and frizzy) and is as thick and grey as it was pre-cancer. Curly and springy hair tends to camouflage thinner patches, as well, since it isn't laying flat, and I've worn my "difficult" hair short for decades. Here's a Thanksgiving photo of me (on the right) with my sisters-in-law and niece. Yes, I am holding an Old Fashioned.
(And, FYI, pubic hair seems to come back more slowly...)
0 -
Love the pic, Katty! Your hair is so cute!
0 -
Singlemom, Faith and anyone else losing hair to Ibrance - especially on top of your head. 2 months in, I needed to wear a hair halo to work. I am posting this for any newbies worried about hair loss on top. I use the "fall", it's lighter than a wig, clips in, you can wash it or your hairdresser can, and it lasts quite a while. http://halocouture.com/the-fall/ I am on my second one and no one is the wiser at work or anywhere else. My eyelashes are pretty gone, so false ones do fine. Eyebrows are lighter so I pencil in any missing links. lol Happy holidays ladies!
0 -
Has anyone found that taking ibuprofen has lowered their neutrophils? X
0 -
Chico - I have not had any issues taking ibuprofen and I take quite a bit.
>Z<
0 -
Thanks Zarovka I just thought I had read this somewhere however you are always pretty clued up so maybe I misread something.
Have you experienced any dizzy spells with this combo? I have only once experienced dizziness which was a middle ear problem years ago but have had a few woozy moments since starting these 2 drugs. Not really sure if this is a s/e anymore than the lower back pain I am having is or just arthritis. I feel otherwise well and hope you are too. Xx
0 -
Dizziness, nausea, poor balance, general shakiness .... check.
It's hard to tell if that is Ibrance or letrozol.
>Z<
0 -
I've had very brief spells of vertigo lately. I had them after treatment. Had a brain scan. Clear. Told to drink extra water three times a day.
I can tell my ear is clogged. I'm also not drinking enough. Seasonal changes, stress. Might be time to break out the mucinex.
0 -
Chico, my MO doesn't want me to take Ibuprofen, which I used to take for arthritis- he wants me to take Tylenol instead as needed - but I can no longer remember why. Ask your doc to be on the safe side.
0 -
Chico, I had a couple of weeks with dizziness and random falls when I started this combo. Had a brain MRI which was clear and was told to drink extra water. Happily the dizziness has gone just finishing third cycle)
0 -
I also had a couple of days wirh significant dizziness. Had MRI and all was clear.
0
