Ibrance (Palbociclib)
Comments
-
noisy- which counts does it effect the most
0 -
Dianarose - Both my red cells and white cells are impacted, but it's the neutrophils that are most critical in determining if you are able to restart at day 28. If that count (absolute neutrophil count aka granulocyte) is too low, you will wait longer to restart a new cycle. That is extremely common. Some of us have also had our dosage reduced if counts don't rebound.
0 -
Just trying to prepare myself. Those who had hair loss did any come back? So tired of being bald . I know it sounds silly considering everything else
0 -
Thanks Moissy, noting your results on the Turkey Tail Trial. Negative results are very important.
>Z<
0 -
Dianarose~ I had the heavy chemo plan and had abraxane and I was bald bald. I begged my ocologist to tell me if it would grow back and he said to me "nothing I have given you will prevent your hair from growing back". I was so worried because everything I had read said it was possible. I am about to finish my fourth round and I have a head of thick brown hair, soon I'm going to actually need a shaping up it's growing so much. I was lucky and mine came back wonderfully and I take 125 mg of ibrance And anastrazole. Some very small sore spots on my scalpbut excersise does help that also. Which I learned here from Z. I have also heard it could thin out exsisting hair. So far I have been lucky. It took a while to kick in after the heavy chemo , but once it kicked in it hasn't stopped growing at all. I used to have hair down half my back. So I know exactly what you mean. It was the hardest part for me. Hope you have the same good results with the hair.
Stay strong! ~M~
0 -
Casun- could your pain be from the bone mets themselves? My pain from bone mets did not go away until completing my first cycle of Ibrance. Hope you get relief quickly.
diana rose-wish those flipping platelets would come up in number for you. Did they give you a name for this? something long and confusing like idiopathic thrombocytopenia? Praying for reversal ASAP and holding you in the light.
So, a little caveat in my "stable" status..... My recent scan was basically the same as the one I had in Sept. 2016. However, my MO thinks that had we done a scan between Sept and Feb. that it may have been better than either. So with my history of recent pain(now mostly gone) and rising tumor markers, I will go another month on Ibrance, then have tumor markers done. If they are still rising, I get a free ticket to Fulvestrant land. The good news is that everything is still in the bones. I think my MO wants to try and keep it that way.
I felt a bit deflated after leaving the appointment, even though i have done a lot of mental work around progression. it still hits ya,tho. Also I have my 31 YO DD living with me who is solidly in recovery after 13 yrs. of eating disorder, alcoholism, narcotics and shoplifting addiction. She still takes some prescription meds. for anxiety and has basically been in bed reading books for a year. it is a small miracle that she conquered her demons, but at times I get overwhelmed and sad by her lack of functionality. of course, today happened to be one of those days...
So, a little down tonight, but relieved that disease level is essentially same as in Sept. super relieved the liver mets have not resurfaced.
Sending love and hugs to all, take each day as it comes....MJH
0 -
MJH- yes that is the name of the platelet problem. They are guessing the cancer is causing it. Who knows.
Micmel - very encouraging on the hair. All I have right now is white fuzz like a baby lamb lol.
I don't feel as weak as I did in November with this platelet issue so maybe it will turn itself around.
0 -
Dianarose, Sorry to hear about the platelet problem you are dealing with. I will pray for a quick turn around. I lost a ton of hair on Ibrance the first go round. I never had bald spots but lost the long length and it was thin. It's been 4 months since and it has come in really thick at the roots. I have been taking high dose biotin and using Rogaine for women. I just started Ibrance again and just finished my first week. I am going to keep using the Rogaine and taking the biotin in hopes that it will help stop shedding. I don't think most women lose as much as I did and some don't have a problem with shedding at all. I wish you the best and hope your hair come in thick!!!
Robin
0 -
Thanks, Z. Are you feeling any better yet?
0 -
Dianarose ~that little peach fuzz is exactly how mine started before it really kicked in. Sounds like you are on your way to having hair again!
That's really great! Now let's get those counts cooperating as well! Rest well everyone! ~M~
0 -
Thanks Moissy, noting your results on the Turkey Tail Trial. Negative results are very important.
>Z<
0 -
My wife has taken a number of different mushroom extracts, ranging from Maitake D pro 4x, six mushroom hot water extract, whole maitake, chaga tea, and now AHCC. She gets her blood tested at one week out from finishing up chemo, and additionally at two weeks out if there was a problem at one week out, which there typically is.
Prior to starting chemo, her neutrophils were around 1.4. After a month on a combination of maitake D extract, six mushroom blend and chaga tea, her neutrophils went up to 3. After months on chemo, her neutrophils would typically fall to below 1.0 at one week out. We switched up to maitake D extract alone, at the clinically proven optimal dosage of 6mg/kg of body weight. With that dosage she would get up to 1.4 after two weeks off. After about 6 months we then switched to AHCC at 3.0 grams daily and found the results equalled the maitake, but with less inconvenience of dealing with a liquid extract. The liquid is a challenge if you are travelling.
We now have her on 3.0 grams AHCC per day, plus a low dose of maitake (1/4 recommended dose), a low dose of 6 mushroom extract and chaga tea, to see if there is an additiive benefit. Her blood test yesterday showed her neutrophils at 1.4 at only one week out from chemo. That is the best recovery of neutrophils we have seen to date post chemo.
Now its important to know that more is not necessarily better. When Memorial Sloan Kettering did dosage escalating trials of maitake D extract on breast cancer patients, they found that 6mg/kg was optimal, and that going beyond that, the results were actually suppressive of the immune system. For that reason, we are not exceeding the optimal dosage of miatake, and not even coming close as its combined now with the recommended dosage of ahcc. I am not aware of dosage escalating trials with any other mushroom extract than maitake D, so we don't actually know the optimal dosage for most mushroom extracts in humans. There is research though that shows combinations of extracts do better than one extract alone. It would appear to be confirmed in the latest blood test on my wife.
0 -
MJH- I think it is the mets that is causing the pain but I found it odd that there was a dramatic increase in pain in this first round of ibrance? I have heard of tumor flares but didn't know if that was and increase of pain or just a flare in blood marker results ( which my mo doesn't test because he doesn't believe in them.....)
Dianarose - I was pretty worried about hair too because I was just getting my hair back when I started ibrance. I am not an expert since I have only really been on it for 2+weeks but my hair has continued to grow. Scalp is getting a little sore but haven't noticed any shedding.
Following along the turkey tail conversation and other mushroom information.
0 -
Timothy, I too take AHCC and was wondering if you can tell me what brand your wife using. I was using AHCC plus from Douglas Laboratories but the price is so high. I am still paying a little over $100 per month and wanted to know if that is the norm. Of course I will keep paying that for a reputable product.
Thanks,
Robin
0 -
She is using the Now brand, that is sold at 750mg strength in bottles of 60 for around $60. Yes, that's expensive. Around $120/month for it. Its slightly more expensive than Maitake D extract per day.
0 -
Thanks Timothy, Thats about what I pay for mine, say strength and amount, 4 pills per day!
0 -
Had labs today. Platelets up to 76. Very slow progress. Need to be 170 or higher. Got some hydration and steroids while I was there. Back tomorrow 😆. It's over an hour drive one way.
0 -
Dianarose, up is the right direction. Hoping that is a sign that your platelet count will start to rise more quickly now. Do you have a driver whose company you enjoy?
0 -
Shetland pony- hubby always takes me. I am blessed. We play adice game when we are there. Makes the long hours go buy quicker.
0 -
I'm glad to hear it, Dianarose. Date time.
0 -
Thank you Timothy for the mushroom update. There are quite a few strategies for driving up neutrophil counts with supplementation strategies. It's worth playing with combinations and doses because we are individuals. The great thing is that we can measure the response with a CBC panel. It looks you have found the magic combo for your wife. This will be huge ...
>Z<
0 -
Getting my platelets checked again this morning. My bottle of Ibrance just sits there until this is under control. Praying she does not want to give me more A/C today.
I know some have posted Claritin helps with side effects, which ones? Was wondering if it might help with the full body skin burning I get from chemo
0 -
Dianarose~ I used Claritin for my bone joint pain before any type of shot , like Xgeva or when I was taking neulasta. I don't know if it would work for your skin issue. I am so sorry you are going through all of this. It truly is so maddening. I have terrible nerve damage under my arm from my nodes being removed And it is constant awful burning raw pain. I have been given Lidocaine 5% ointment to use topically over my skin and it works wonderfully, i use it every day several times a day. It might help you, you should call your doctor , Do you have a palliative care doctor? I have one and they get me whatever I need, whenever, they are amazing. It's something if you have, you should utilize. I also have lidocaine patches, I use them also everyday on my back, because I get bone pain slightly annoying from the mets on and off. Also works wonderfully. For anyone else that has back pain or pain from bones. It eliminates the need for the heavy narcotics, until you can be home and resting for the day. You may want to reach out and ask about the ointment. The patches would hurt your skin pulling them off if your skin already hurts. It honestly helps me so much. I can not make it without it, the nerves are so painful. I just hoped it would provide some relief for you and your pain. Let's hope it would!
I hope you have a restful day and praying counts have rebounded again!
~M~
0 -
Micmel- I have the cream. I use it before they access my port and for shot. I don't think I would want to cover my entire body with it though lo
0 -
Dianarose~. The cream is usually only 2.5 % lidocaine. This is ointment and it spreads easier and works way better. It might not be good for your entire body, but it would relieve the worst pained area spots that you have. It works wonderful and lasts a lot longer then the cream, the cream is for the port access, this is just ointment that specialist pharmacies use in their specialized creams, that cost a fortune, but this is covered by my insurance and I pay nothing for it. It really helps calm my nerves in my arms. If anything can take the edge of. , I'm all for it! The ointment is way different than the cream. Just a thought. I use it on both my arms everyday several times a day, and I have to say it gets me through my days from that nerve pains. Which is what I believe may be breaking down in your skin as well from all the neuropathy. I just want you to find some much deserved relief! Rest well ~M~
0 -
Hi. I finished my first 21 day cycle of Ibrance yesterday. I was able to continue my daily schedule, and exercise daily. I purchased a standup desk that you can put up or down. I leave it up most of the time and try to stay active. I get sleepy and just tired around 2 oclock each day and just want to sleep, but i'm usually able to get a second wind as I have a nine year old and i'm a single parent. I've got to admit that I really want the doctors to do surgery to remove what we know are in my lymphnodes. I don't know why they wouldn't want to do that knowing it has not yet moved to my lungs or brain etc?? Yes, it has grown on my skin and both sides in the lymph system, but damn, I want them to remove it AND treat me with biologics AND do radiation.... Ive been through this twice now, but this time its different....it's like they give you the mets diognosis and give up... I don't give up and expect nothing less from any team of doctors. I want to read some stories of 30 year survival from BC METS stage IV...
0 -
are you still taking Ibrance?
0 -
Micmel- I will ask about the ointment when I go to the cancer center on Saturday. Thank you!
Platelets went up a tiny bit to 90 so had to do another round of A/C today. All my new hair is going to fall out. Pisses me off
0 -
Andrea - Local treatment of primary tumors... it's debatable whether it helps or hurts. The evidence is unclear. Some studies show a small marginal benefit, other seem to show that removing the primary triggers the metastasis. All the studies are flawed. In any case, you want to do systemic treatment first to reduce the size of the tumors. Ibrance is capable of getting rid of tumors entirely, so it makes sense to give it some time.
I have decided not to do it so far. But it's still on the table. You have time.
This topic is discussed on this thread.
>Z<
0 -
Hi, I am on my 19th round of Ibrance. Cancer was founded in hilar node in my lung as well as having pleural effusion. Cat scan also showed many nodules but could not reach them to biopsy. Last two cat scans showed lymph node back to normal and effusion gone. Nodules remain the same and doc questions if they are cancer at this point. My TM markers have always been normal. MO now states she wants to wait 6 months before scanning me again. Though I am ecstatic about my cat scan results moving to every 6 months does make me a little nervous. Is anyone else on a 6 month interval?
Also, just want people to know I have been on 75mg since my 2nd round so the lower dose can still be effective!
0
