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Ibrance/Palbociclib/Pallas trial... experiences?

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Comments

  • anna-33
    anna-33 Member Posts: 108

    And by the way... I had a biopsy of my new lump today... Will get det results in one week... (one looooooong week)

  • lexica
    lexica Member Posts: 138

    Anna - wow, your numbers did get low - did they tell you to stay home or isolate yourself or anything? I (well, along with my husband and mother-in-law's very insistent help) made the decision to pull my kids out of day care and send them to grandma's and work from home for the week. I think it's a bit of a drastic measure, but...

    Thinking of you, Anna and hoping it's just scar tissue...waiting is the worst.

  • anna-33
    anna-33 Member Posts: 108

    I try to avoid to take/pic up my kids from the kindergarden... Beside that nothing else thank focusing on handhygiene..

  • Lallasus
    Lallasus Member Posts: 8

    I have been put on 75mg now because of low white blood cell count and will have to come off the trial if this shows no improvement. Physically I am ok although I had zoldronic acid last week and felt unbelievably tired though this has passed now.

  • deedledee
    deedledee Member Posts: 9

    Hi Anna, I was in the Rad group wnith you. Sending good vibes your way. Hoping you get good results from the biopsy. So sorry you're experiencing the wait zone again. Keeping you in prayers.

  • anna-33
    anna-33 Member Posts: 108

    Thank you Deedledee.... It was benign! Happy!

  • deedledee
    deedledee Member Posts: 9

    So happy to hear Anna. Great news indeed.

  • anna-33
    anna-33 Member Posts: 108

    Mouth sores anyone? I got one big now and its huges... need to get something to stop it developing..

  • lexica
    lexica Member Posts: 138

    Yay, Anna! That is such good news.

    Sorry, can't help with the mouth sores - I remember before I started chemo I bought a gazillion popsicles because i thought I would need them for mouth sores but never got them. Also got biotene. Kids ate the popsicles...biotene is still in the medicine cabinet. Both of those things are supposed to help, but I can't say from experience.

  • anna-33
    anna-33 Member Posts: 108

    I am afraid that I am out of the study... for the last cycles i have been on a low dose, but even after a 14 days break from the medicine my neutrophile was 0,7 ... Anyone with experiences

  • lexica
    lexica Member Posts: 138

    Hi, Anna, just wondering how you are doing - are you still in the study? I go for my cycle 2 blood work today (this time last cycle, I had to take a week off). I've been feeling so tired - maybe even chemo level tired - lately that I think that my blood counts must be low. Then again, it is sweltering outside, so maybe it's the heat? One can hope...

  • Lallasus
    Lallasus Member Posts: 8

    I am afraid I have had to come off the study as blood count was too low. Three strikes and your out I have stayed on in the control group however

  • anna-33
    anna-33 Member Posts: 108

    I am still in... 100mg... my bloodcounts are on the limit... I was hospitalized for a few days on this cycle due to infection...

  • anna-33
    anna-33 Member Posts: 108

    How are everyone you doing?

    What have your oncologists said about Ibrance, do they belive in it?

    New members included? How can we reach out to new members in this tread?

  • Billb464
    Billb464 Member Posts: 20

    hi, I just started the Pallas trial last week. So far no SE with it or the tamoxifen, I know that might/will change as I am on it longer. I have my 1st blood work on Monday, so I’m interested in seeing if it has changed. My MO said that anything extra added could always make a difference in the future, so it was worth a try



  • lexica
    lexica Member Posts: 138

    Lallasus - sorry you got booted from the drug arm.

    Anna - are you still doing okay? How were your latest counts. I've had two MO's that seem pretty supportive of Ibrance. One is the PI for the study, so, I'm not surprised that she is supportive of it. The other one (a breast cancer specialist at the NIH...I see him when I can as he has one clinic day where I receive my treatment) didn't know too much about the study, but his statement was "things that tend to work well in the metastatic setting work even better in early stages." So, that's good. I know Ibrance has been touted as a highly effective treatment for metastatic BC.

    Billb464 - welcome :) How are you doing so far?

    My fatigue has continued to be a challenge the past couple weeks. Any one on this and still working full time? I've got two little ones, too, so I know that alone will tire me out, but it seems worse than it should be.

  • anna-33
    anna-33 Member Posts: 108

    My bloodcounts jumps between 0,7 and 1.0 (neutrophils). Hope to stay on this dose as long as possible (100mg).

    I feel a kind of fatigue (loss of power) and need a lot of sleep (that I only could dream about with my two kids 1 year and 4 years old) .

    How are your bloodcounts?

    I have finished half a year with Ibrance now....

  • notmargaret
    notmargaret Member Posts: 28

    Hi All. Just responding to Anna's general request for status . . . I've just about made it through 8 cycles at 125 mg and will have another round of blood tests in about two weeks. My neutrophils have been consistently low since starting the trial, hovering right around 1.0. My oncologists were optimistic that the Ibrance would be beneficial.

  • Billb464
    Billb464 Member Posts: 20

    thank you lexica, I am feeling pretty good so far, I am still exercising as much as I can each day (I try to get in 5-6 miles at the park). I have noticed a little bit of soreness in my legs, but not sure if that is just general age stuff.😉I had my 1 st blood test today- the 2 week mark and will be interested to see if things have changed any. I start back to school next week, and the students come back the week after, so hoping no infection problems, I did work thru chemo last year and didn’t have any problems. I have noticed a little bit of nausea at times, does any one else have that problem?

  • Z11
    Z11 Member Posts: 3

    Hi! I elected to do the trial and am just coming up on my initial 2 weeks. I will have a lab check tomorrow. I am considered high risk for reoccurrence, therefore, my breast surgeon, oncologist and the oncologist who provided me a second opinion all highly recommended it. I was diagnosed at stage IIB with positive lymph nodes. As far as randomizing, you will be randomly selected to either receive the drug or will be randomized to not. I was happy I was randomized to receive it. The cycle is 3 weeks of the drug followed by one week off. I hope this sliver of information helps :)

  • anna-33
    anna-33 Member Posts: 108

    Welcome Z11... I am in cycle 9

  • notmargaret
    notmargaret Member Posts: 28

    I too am on Cycle 9 in the Pallas Trial. Welcome! Let us know if you have questions as you progress in the trial.

  • Z11
    Z11 Member Posts: 3

    Great.... what dosage are you on? I am currently on 125mg … taken it for two weeks and my first labs dropped my neutrophils to 1.4.. Have you experienced any side effects? Thanks for responding!

  • Z11
    Z11 Member Posts: 3

    Thanks for responding!!! Same questions for you as Anna

    Happy

  • Billb464
    Billb464 Member Posts: 20

    hi everyone, just finished with my 2nd cycle and now have my 7 days off, my counts did come down but the oncologist felt like everything looked good and I am on the 125 mg dose. I really haven’t had any side effects that I know. It does upset my stomach after 1st taking it in the morning but usually resolves mid morning. I do have the rest of my reconstruction surgery scheduled for November, so I will go off it for the month, and restart in December. It was mentioned that after the 5th Cycle that you go in every 3 months??? I can’t wait if this is true

  • anna-33
    anna-33 Member Posts: 108

    I am on 100 mg...due to neutrophils below

  • lexica
    lexica Member Posts: 138

    Hi, All - I start cycle 5 tomorrow and am still on 125 mg. I had a dip during cycle 2 and took a week break but my counts have gotten better since then. How is everyone feeling? I'm mostly tired - i don't notice much else

  • cia
    cia Member Posts: 2

    I am starting cycle 8 this week on the PALLAS trial. I am on 125 mgs. So far i Have just been tired although the last couple months have been a little better as far as the fatigue goes. However, my biggest concern is the hair loss. I am fortunate to have a thick head of hair. However, I think I have lost about half of it. I can see it is very thin but still not noticable to others I am still losing hair. I am afraid the next step is back to wearing the wig if it gets too much worse. Has anyone experienced this and do the hair loss taper down or will I continue to lose hair? My MO says she doesn't have any patients wearing a wig from this drug.

  • Billb464
    Billb464 Member Posts: 20

    I did ask the doctor about hair loss, she said so far she doesn’t have anyone who has lost their hair, (like chemo) but she did have one patient who said she could tell her hair was thinning out(the doctor said she she couldn’t tell by looking at her). As crazy as it sounds, if that starts happening to me, I might stop taking it. I am just getting my hair back after chemo.😁. So far I haven’t noticed anything but I am getting ready For cycle 3, so you are ahead of me

  • cia
    cia Member Posts: 2

    I have another month before I see the DR. Hoping the hair loss tapers off. Ill keep you posted

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