Ibrance (Palbociclib)
Comments
-
Pat, love your Elvis. You are very creative!
0 -
Pat - I just liked your page and started looking at all of your art - amazing!!! So whimsical and fun... so much to take in! Thank you for aharing
0 -
Love from Philly, my nausea is definitely an Ibrance thing. When I took the 2 weeks off after the last cycle it stopped completely. I take Arimidex. When I took an AI alone I had a lot of crummy side effects but nausea wasn't one of them. Ibrance has been such an odd drug with a variety of side effects coming and going. With the 100mg fatigue was a challenge but that has diminished with the 75mg and I'm ever so thankful. Fortunately, I've not had Lupron injections as I'm 68 and that ship has sailed! I've had friends who said side effects from Lupron were some of the most unpleasant on this journey. Big, bad hot flashes are what I remember them complaining about. I have warm flushes from the Arimidex but nothing bad.
You should get with LaurenH and see Mr. Rogers' movie!
Love from PatG
0 -
Thanks, IntoLight and LaurenH, the art has been a lifesaver on this cancer journey!
0 -
TY again for answers to my question regarding length of time to see ibrance/letrozole response..Now going to PT for lymphedema on side I just had mastectomy..triple negative..sentinel biopsy..no nodes malignant..
0 -
Pat is your art on FB or the special MBC FB? I'd love to see it.
0 -
Found it. Love your art PatG!
0 -
Found it. Love your art PatG.💞
0 -
Thank you, Grannax!
0 -
I know December seems a long way off, but I am thinking of going to the San Antonio Breast Cancer Conference. I think it is the largest conferencededicated to just breast cancer. The have an advocate registration rate of $150 and there are rooms for $140 ish, but I dont know how long they will be available. Anyone else interested in going?
0 -
What are the dates? Do you have to have a science background or is being a BC and MBC patient for 27 years enough? Ha it sure should be more than enough I would think.
0 -
the conference is December 3-8. It is a scientific meeting so having a science background is helpful. It will present the latest science in breast cancer. You may want to look at past meeting agendas and see what you think
0 -
Time for a cure-- I tentatively have SABCS on my calendar, but I have a huge 3-day Regional work thing that I may not be able to miss...I attended SABCS last December and found it interesting and informative; I was predominantly involved with meeting lobular researchers and clinicians (I went as one of the representatives of the Lobular Breast Cancer Alliance), talking with the MBC Project scientists, and also meeting with a few of the major the pharmaceutical company reps to discuss some of the ways that they can consider modifying clinical trials so that lobular patients would be better able to meet eligibility criteria--(who, as I'm sure you know, are often ineligible to participate in trials based on ILCs' frequently non-measurable presentations.) It was a productive and yet ultimately disappointing to hear how very far off meaningful treatments really are. But I'd love to go again. I won't know until October if I will be able to attend...
0 -
I have a question that maybe someone can answer. About a month ago, I started my 1st cycle of Ibrance 125. About three weeks, I had bloodwork done and WBC was low (1.1). ONC took me off of it and said to wait til my numbers come up. It has been almost three weeks since I stopped the Ibrance. Just had bloodwork done a day ago because I see my ONC tomorrow to make sure my numbers are ok before he adjusts the next cycle. Well, my WBC is still low (2.6 now) . Does this seem normal?. I really don't want to stay off the Ibrance for another week or so.
Kathy
0 -
I have a question that maybe someone can answer. About a month ago, I started my 1st cycle of Ibrance 125. About three weeks, I had bloodwork done and WBC was low (1.1). ONC took me off of it and said to wait til my numbers come up. It has been almost three weeks since I stopped the Ibrance. Just had bloodwork done a day ago because I see my ONC tomorrow to make sure my numbers are ok before he adjusts the next cycle. Well, my WBC is still low (2.6 now) . Does this seem normal?. I really don't want to stay off the Ibrance for another week or so.
Kathy
0 -
My WBCS are always low, that is life with Ibrance. What they are looking at is your ANC whic is you absolute neutrophil count. It should be over 1000 (or your lab might report it as 1.0). It is calculated by multiplying your WBC by the percent of neutrophils. It is a measure of how well your immune system can respond to an infection, especially a bacterial infection. At a dose of 125 mg. Many women have a hard time keeping their ANC up, sometimes they reduce the dose to 100mg and that helps. It seems that 100 mg is as effective as 125mg, hope that helps.
0 -
neogirl, my oncologist doesn't ever prescribe 125mg Ibrance. He starts all at 100mg. Even if yours is reluctant to do this, you can press for it. I'm in the "ask for what you need" camp.
Love from PatG
0 -
neogirl;
I am in my 3rd cycle of 125 Ibrance/Letrozole. My numbers are low but I guess not too low. I asked my oncologist what he would do if they became too low. He said he would take me off for two days then restart me. Funnily enough my RDW is high at 19.2.
Lauren; Congratulations on your scan!!! Fantastic results. Yahoo
All the best,
Cathy
0 -
Thanks for the insight into some of the lab results. I have been wondering about the key numbers to focus on. My tumor markers have been going up some but my oncologist hasn't seemed as interested in that as before I started Ibrance. I am completing my third cycle (100 mg from the beginning). My Absolute Neutrophils number was 1.98 last month which is just a bit higher than the month before but substantially below what it was before I started Ibrance. Based on the information on this website that seems to be normal as long as it's above 1.0. This whole process is pretty nerve wracking - every month I obsess about the "numbers". I get "weird" things happen from time to time (side effects?). Last month my jaw, ear, and teeth hurt so much I could hardly open my mouth. The doctor diagnosed it as an infected salivary gland - prescribed an antibiotic and that fixed it. Never had that before in my life. Strange stuff.
0 -
Posted last week about possible surgery for leaky mitrol heart valves. I've had severe shortness of breath which I assumed was from the Ibrance. To make a long story short, I have to wait 3 months before they even address the heart issues. I just started receiving Faslodex and Ibrance on May 30th. So, this progression is fairly new. My ONC and cardiologist consulted and decided to wait the 2-3 months to see if the treatment is working. The heart issues won't even be a consideration til at least October.
In the meantime I can't even walk 10 feet without a huffin & Puffin. To say I'm disappointed is an understatement. I know I have two different issues here. I'm hoping the doctors know best. I guess if they thought I was in some danger they would do something. I have a blood draw tomorrow. Very anxious to see the counts. I don't know what they will do if the counts are too low. Just changed from the 125 Ibrance to 100. Hoping that helps with the counts. Good-Bye summer. I am trying to stay positive as I can. I tried going grocery shopping - thinking I could just hang on to the cart and be OK. No-go for that. I am very fortunate thou, my husband and kids have really pitched in with meals, laundry and such. I'm really blessed that way. And, I know this will pass in time.
chrissy
0 -
Chrissy-That sounds both scary and frustrating. It's so hard to know what the priority should be-I guess you just have to trust the doctors. Glad you have a family that is so helpful. Prayers for peace and patience.
0 -
Chrissy- A friend who was on Faslodex ended up having it affect her heart and had to go off. It may be worthwhile to get another opinion or at least ask! It’s rare but it does happen...she’s taking heart meds from now on. I wouldn’t wait three months with this onset of symptoms
Ibrance doesn’t cause shortness of breath in my experience. Sending you good vibes for some great results from Ibrance!
0 -
Chrissy, I'm so sorry you're having this struggle and pray that it corrects itself. I have only one small suggestion for simplifying your life....using one of the grocery delivery services like Shipt or ordering as much as you can from www.target.com or www.jet.com. Also Whole Foods delivers free in some cities if you have an Amazon Prime membership. I've decided that the Prime membership pays for itself ($139 annually now, I think) if I just look at the cost of gas for a million little trips.
Love from PatG
0 -
I know that some of you have talked about mouth sores but I can't find it. I took the end of my 6month cycle of ibrance and I have developed mouth sores in the roof of my mouth. Does anyone have any suggestions?
0 -
Chrissy, I am sure you are fearful. I will be praying your SOB improves and the doctors gain wisdom on your situation. Three months does seem like a long time, and hopefully your body adjusts to the meds quicker than that.
Holmes, mouth sores are a common side effect. I use Biotene mouth rinse when that happens. I also brush my teeth with baking soda once in a while and that seems to help me. Some other ladies will chime in with additional solutions I am sure.
I admire any of you who have the energy to attend a conference. I save the energy I do have to visit my kids and grandkids, and read the research from my recliner.
0 -
hi Holmes! You can try doing a search for mouth sores - there’s a search button under the community drop down menu.
I get a lovely painful mouthsore about 1 time every couple months. My MO prescribed this dental paste that I seem to have lost somewhere in my bathroom?? Ibrance/menopause/letrozole Brain!! I am not sure if it would work and I am now on Medicare and insurance won’t cover it.
I do salt water mouth rinses in warm water as well as I rinse with chamomile extract mixed with probiotic powder and that seems to calm things down a bit. Also, NSAIDs or Tylenol for the pain. As well as applying ambesol.
I hear that there is something called Magical Mouthwash that other posters have talked about but that is still a mystery to me!0 -
Holmes, I haven't had mouth sores in a year but natural yogurt seemed to be the cure for me. I ate Stonyfield Greek, mostly with canned pineapple. I hope it works for you!
https://www.stonyfield.com/products/yogurt/greek/p...Love from PatG
0 -
Chrissy - I would also suggest a second opinion. I’m so glad your family is there to help you but it doesn’t seem wise to wait 3 months to address this SOB that is causing you so much difficulty. Perhaps your docs know best but a 2nd option may provide additional insight.
Holmes - so far (5 cycles) I haven’t gotten mouth sores but I do appear to get every other odd side effect possible. The oddest one for me is random scalp pain. It moves around on my head and generally lasts 2-3 days. So odd. I’m grateful that it is working for me and so many others and that the side effect and are manageable but every month it seems something new comes along. I use biotene every day and I’m womdering if maybe it ward them off... it’s worth trying
0 -
Thank you ladies for the advice. This time It went away on it's own but I am going to get biotene and use it as a preventative.
Lauren I agree with you. Every month something different. Does anyone constantly feel like they have a cold? For a couple of weeks it's in my sinus causing a headache and sometimes vertigo and other times it's draining and I have a tender throat. And I've been getting random itchy red bumps. Thought they were mosquito bites but I pulled a scab off of one that appeared healed and it came back. I guess all of these side effects are nothing compared to other treatments and worth it to live.
0 -
Regarding white blood cell count - I have been on 125 mg Ibrance and letrozole for almost one year now. My white blood celll count is typically within normal limits or slightly below normal. No idea why it has stayed within the normal range, I guess we all have different side effects. I have had limited mouth sores or nausea but I find a bit of plain Greek yogurt to be helpful. Also the salt water rinse and gum for mouth sores has been helpful. I have a question for Ibrance and letrozole users - anyone have an abnormal EKG? My last oncology appointment the doctor heard an extra beat so she ordered an EKG. It was slightly abnormal and doctors not too worried but will do another EKG this month. They don't think the meds would cause this. Has this happened to anyone else
0
