Ibrance (Palbociclib)
Comments
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My MO recommended Culturelle probiotic. It has seemed to work well for me, but I have only taken it 1 month so far. I am on Zometa infusion. I did not like how I felt on Claritan so I don't take it. I will take a Benedryl the night before occasionally as it helps me sleep, but I rarely have any problem from it. Just sometimes the day after I feel a little fluish. I also only take Tylenol and have not had Ibuprofin since my dx 18 months ago. The different MO recommendations interest me!
Thanks for the info on mushroom extract. I will look into it.
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Good afternoon ladies,
Amarantha I hope you can overcome your fatigue and perform. Sometimes I tell myself, "you just feel tired, but you slept already so you're not REALLY tired, it's the medication." Then I try to force myself to move and it's like a turtle dragging me. BUT sometimes it works and when I get moving the fatigue leaves for awhile. You're just starting so I think you'll figure out your energy level. I pray that you get some energy power from somewhere. I think the Ibrance lands us all on the couch or in the bed at some point.
Jaylea you're my hero - skiing. whoo hooo. I did have tramadol after surgery it worked for me and didn't have that narcotic hangover effect. I also use acupuncture and dry cupping for pain my doctor also gives me some Chinese herbs/moxa. It lasts for a day or two but I welcome it because I hate feeling druggy woozy.
Schoolmom I'm sorry you're having so much pain from the faslodex shot. I've taken them 7 times now and each cycle they're different. Thank God this most recent cycle they sprayed something on and the nurse injected the serum slower and it really made a difference, I think. Usually I am very sore to the touch and where I sit. I tell them aim for the fat please. I have used a heating pad too like you said. When I feel the pains in my hip I just pray its the medication attacking the cancer.
Hobbes really and truly thanks for all of the articles the information is necessary. The drug dealers are in it for the money and we want to live. If they find another more efficient effective treatment I'm all for it. I understand their motivation is $.
Ciaci really think hard about how to stop the cancer talk that coincides with your personality and comfort level. With my close family I tell them everything and then we have our normal conversations. It's hard for someone who's not going through it to understand. I get cancer mean when strangers ask weird invasive insensitive questions and resort to other measures which are completely out of character but backs them out of my personal private space. Good luck! I'll be cheering you on.
NKB relatives, strangers and friends with cancer stories and don't forget the ones who were cured. People give me all types of diet tips about prevention and ridiculousness sometimes. Underlying message is it's my fault that I have cancer because I a. took birth control pills b. ate french fries c. ate chocolate - fill in the blank with any other horrible thing. deep sigh - if it were only that easy to diagnose.
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Well I am officially starting Ibrance/Faslodex. Femera has quit working after 15 months. I have five new spots all on bone. Will start the Ibrance next Monday I think. I wish I could wait until after Christmas to start it as it is the first one in three years that all my family will be here.
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Thanks to all! It always makes me feel bettter to here from those who have gone through it.Z, always good to hear from you!
I have done radiation before on my breast and axilary so they are trying to be very careful to make sure they avoid that area and just get the lungs. I will try probiotics. Anything to keep the counts up! The funny thing is that the “expert” Doc is the one saying to just go down a bit and my “local” Doc is the more cautious. Guess I will try first and if I go to low I can always get off Ibrance.
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wow Kessler. I have been on this board since 2004. Not at stage IV until 2014though. I completed 12 months on Ibrance and faslodex with great results. I have been off Ibrance for 3 months and see my numbers creeping up. I have no doubt that I will resume but a little break is wonderfu
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Good afternoon Gracie
Welcome to faslodex Ibrance. I pray you get fantastic results from it. And wow it's covered for you.
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TXG my Onc. took me off of Ibrance while I had my radiation. I was so weak and my counts were low. A nurse told me she was shocked that I was left on it during radiation. Talk to the concerned guy.
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I asked rad oncologist today about stopping ibrance during spinal rads and she said no problem continuing. Will have 10 rad treatments with possibly 6 while in Ibrance cycle. I am on cycle 1 of 100 my.
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Clearly, there are differences of opinion here. I suspect that spinal radiation doesn't affect neutrophil production as much as radiation to the pelvis, and long bones in the leg does, as the spinal bones (vertebrae) don't have much bone marrow, when neutrophils are made. I am sure that school mom will have her neutrophil count monitored closely. current standards often do med and rads at the same time, but it can be debilitating.
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Husband, how much maitake D fraction did your wife take? I was taking it for a few years, the 4x bottle, by putting in my coffee. I didn't really know how much to take so I just sqirted about half a dropper full. I was using it for cancer. A lont time ago I read about a study in another country where they cut the chemo dose in half and added the maitake and got just as good results. I quit after awhile due to getting other things to try and it was a bit pricey for how much I was using. My dad recently said he would buy it if I want to take it again. My dad's awesome.
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This is my first post since 2012. I was diagnosed early stage six years ago and found out this past July (on my 34th birthday) that I'm now living with stage 4 BC. (Mediastinal nodes with a 1.3cm lung met and multiple micro nodules in both lungs.) I always knew it could return, but I was just FINALLY feeling like I was moving forward and really getting my life back post-cancer. My husband and I preserved embryos before chemo in 2012 and were planning to become pregnant this Fall. The scan that determined that the cancer was back was supposed to be my "you're healthy! go have babies!" scan.
To chime in on radiation & Ibrance... my short-story-long experience: I started Ibrance a week after 10 rads to the mediastinum mid-October. My oncologist didn't think it was necessary to check my labs on day 1 or day 14 so it was done on day 28 when I was planned to start cycle 2. My neutrophils were 0.3 (300) and it took over 4 weeks to get them above 1.0 (1000) Being that it was only my first cycle I was really discouraged that I needed over a month to recover. That and the fact that I had 2 weeks of mouth sore hell had me pretty miserable and frustrated.
Completely. Devastated. My MO and RO believe my counts tanked so badly because I had just finished radiation, which I reacted to terribly as well with severe esophagitis (horrifically painful!). Either way, it was brutal waiting so long to start the second cycle. I'm now 10 days into cycle 2 and checking my CBC in a few days to monitor since I went into this cycle with neutrophils just over 1.0. This time I am thankfully equipped with Filgrastim to boost my counts up if/when needed. I'm also on 100mg of the Ibrance this round.
From lurking since the Summer it sounds like my experience isn't uncommon, although I was troubled that I was so severely neutropenic and having to wait so long for my counts to increase.
I'm also receiving my old friends Zoladex and Letrozole once again. Hoping that those were at least doing something during my elongated Ibrance break. And since my recurrence happened OFF all treatment, the hope is that I've still got some juice left in the Letrozole too. Supposed to be scanning next week but may postpone due to not having at least 3 cycles under my belt. (And really not stoked on the idea of a scan right before the holidays.)
Most days I'm OK. Others I find myself grieving so hard that I'm now facing my worst nightmare. My husband and I are just really struggling with our family/life plans now being derailed. All I can hope is that I get a long run on this first line. And every line.
I appreciate being able to come to this thread for insight. I love reading about all the long runs on this treatment and seeing the stable and NED posts! It's helpful to read everyone's experiences and tips for managing SEs etc. Fortunate to have access to this drug.
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HLB
The maitake 4x is 3.7 mg/ drop
The study showed 6 mg/kg is the max you should take, so we went with 5 mg/kg.
My wife weighing 55 kg, that means she needs 275 mg/day.
That works out to 74 drops a day. So we did 37 drops, twice daily.
We alternate between that high dosage for a month, and a lower dosage (as per bottle) plus chaga tea and 6 mushroom blend. Shaking things up, and hedging our bets.
If we are on a trip somewhere and she doesn't want to bring maitake liquid, we switch to AHCC capsules.
There was a japanese hospital study where they used various regimens, but the most common was 125 mg maitake d extract daily, plus 4 grams of whole maitake. We do that some times, but haven't in a while, because it takes a lot of time to cook up a batch of maitake every morning. I slow boil the ground whole powdered maitake in the microwave. I buy whole dried maitake mushrooms, and grind it up dry in a blender, then use a heaping tablespoon, to get approx 4 grams. Add it to a cup of hot water and slow boil it in the microwave, then she drinks the whole thing. Yuck. I think that's better than simply eating capsules with whole ground powder. It takes heat to extract the goodness.
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Ashlyn, I wish that I could give you a hug! We're all so very sorry about your diagnosis but as well so very glad to welcome you to our ranks and to our support. Sending a hug to your sweet husband, too.
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Dear Ashlyn, I am terribly sorry to hear you must grieve anew. Devastating news indeed. I do hope Ibrance will work miracles for you (for all of us !). Meanwhile, hang in there !!
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Thanks for that info Husband. Wow that is a lot of freaking drops! They need to sell by the quart I think. Ha!
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Ashlyn, so very sorry for what you are going through. This disease sucks but when someone is young and just starting a family it is just so profoundly unfair. But we move on. I remember well thinking I was in the clear and suddenly getting a call from my onc after 8 years. I could feel it as I read your post. It's hard to make new goals, but mine is to live to 80. I'm 54. Yes I live my life in denial most of the time. It helps. I hope your treatment works for years. If the wbc is too much of a problem, the new one, verzenio, is suposed to not cause that.
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Husband, when I put the drops in my coffee it actually tasted good and when I stopped it was as if the coffee was missing something. I'm not very good at sticking to things that taste awful. I stil have some maitake capsules from grifron but they are pretty old. Maybe I could empty them out and make a tea just to try it out.
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Ashlyn, I am very sorry. This diagnosis is hard enough without the added pain of family planning being derailed. That is a lot to deal with. I hope you and your husband have a strong support system. I do want to share with you that I have basically the same diagnosis - mediastinal node and a number of nodules. I was diagnosed about 2 years ago and started on Letrazole and Ibrance. The treatment has been tolerable. The lymph node is back to normal and the cancer has been stable at the least and NED at it's best. There is hope. I plan on being here for a very long time!
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Ashlyn, I am very sorry. This diagnosis is hard enough without the added pain of family planning being derailed. That is a lot to deal with. I hope you and your husband have a strong support system. I do want to share with you that I have basically the same diagnosis - mediastinal node and a number of nodules. I was diagnosed about 2 years ago and started on Letrazole and Ibrance. The treatment has been tolerable. The lymph node is back to normal and the cancer has been stable at the least and NED at it's best. There is hope. I plan on being here for a very long time!
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Ashlyn I'm sorry for your family plans being interrupted especially in hope crashing way. I pray that the Ibrance works for you. I don't know of what the protocols would be to move forward after NED results but someone on here may know. Also their are gynecological onc. Routing for your life to get back on track in the best most positive and fruitful way!!
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How long does it take for Ibrance to start working? I'm on Cycle #4 with Ibrance, Letrezole and Xgeva and I'm freaking out because I'm feeling a new pain on my right side. It's a very dull pain and it comes and goes. I'm hoping it's just me being paranoid about every ache and pain I have because it doesn't feel exactly like the last time. (My mets are to my left sacrum and coccyx) I am also feeling so anxious these days and I think it's because of the holidays. I usually love the holidays but for me it's like a passage of time thing. I can't help but wonder how many more I'll have. I know that's pessimistic and it's so unlike me to be so negative. I also just found out that a dear friend of mine who has been a role model to me for the past 4 years has mets to her brain. I'm just so sad for her and it makes me think this could be down the road for me too. I just hate cancer so much. Thanks for letting me vent.
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I just am in cycle 1 ibrance Xgeva a and Faslodex and have the same questions....I guess everyone is different with their response
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It can take up to 6 months I think. I had a scan at 3-4 months with very minimal improvement, the at around 8 months it showed significant continued improvment. Markers went up the whole time so you don't want to stop it until you have a scan. I ended up being on it 16 months.
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Ladies, I am so thankful for another Christmas. I am praying for all of you who are travelling, that God grants you safe travels free of sickness and pain, and that your days are filled with joy and merriment! For those, like Nancy, who need a special touch to feel better so they can spend the holidays and travels without extra medical burdens. I am also thinking of all of you who will be staying home welcoming and taking care of family and friends, and that you will have the strength to welcome others with joy. And I am not forgetting those of you who, like me, will be staying home spending a quiet Christmas with your closest family. I am not sad as my sons and grandsons have committed to coming in February for my birthday when it is cheaper and less stressful for them. So I happily wrapped and bundled up 4 boxes, stood in line, and mailed off the packages. It means I am all ready for Christmas with 12 days left!
In my new-found spare time, I will be praying for you all and the results of your scans and labs. Especially for Ashlyn who is struggling with family/life plans so young. We all struggle with knowing what meds, what strength, when to stop, when to change, when to soldier on, what to eat, and how to spend time just letting ourselves heal in the best way we know. I am thankful for this site and all of you who share your experiences and questions. You give me hope and encouragement. I am learning to accept less than perfect for me, but it is hard!
So, bring on the Christmas movies and the recliner!
Chris
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Metser Mom I started Ibrance in June and had mets to my spine, hip, ovaries and some in my stomach cavity. After 4 months on Ibrance faslodex and a hysterectomy, radiation to my spine and hip; my pet scan showed (in October) that all of the lesions/tumors were gone except the lesion in my hip which was reduced from 20 to 5. I also felt pains and pangs because there was so much going on but a dear sister on these boards told me that she viewed it as the Ibrance and faslodex destroying the cancer. Stay positive.
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Tanya Djamila, thank you so much for sharing the story of your success with us, that certainly gives one hope. That is really a wonderful success and after four months, my goodness ! I would love to know when the radiation was done relative to the Ibrance, at the same time ? during an interval ? Have the pains and pangs lessened completely ? Did you notice your body changing during this time ? Anything else you can share ? Did you always have confidence that it was working ? Thanks so much for being here with us !
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HLB
If you have maitake D capsules, they are likely already a hot water extract, and don't need further brewing. It's only the raw mushroom itself that needs a hot water extraction process to draw out the polysaccharides. You can buy the dried maitake mushrooms from Oregon Mushrooms, if that's something that interests you. Its around $20 for a whole pound dried weight. That will last you quite a while if you only take a tablespoon a day. But you need to slow boil it and drink the water and ground mushroom to get maximal benefit.
I agree about the taste of the maitake D extract, it tastes sweet to me.
I wouldn't be discouraged if the cost of taking 74 drops a day is too much. You can always take it as recommended on the bottle, and derive some benefit. That dosage of 6 mg/kg being optimal, is simply based on maximum stimulation of the immune system, as they measured it. Nothing to say that is in fact optimal for cancer treatment.
I've recommended the maitake d to a few close relatives, and like me, they report that if they feel a cold coming on, nine drops in a glass of water, seems to ward it off. But of course, that isn't very scientific.
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Thanks husband. I did notice that I rarely if ever got sick when I took it. The pound of dried mushrooms sounds very affordable.
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Hi all, back from a lovely birthday getaway and catching up with everyone. I might have been too optimistic about skiing , i got a few runs in but was exhausted and ended up with a bloody nose. Still not ready to completely write it off, but will pick my spots and keep expectations low.
Annmary, I haven't lost any hair yet but my eyelashes are almost gone-weird.
Z, hope you're doing well and thanks for the loratadine update. I take 3 a month, 1 day before Zometa, 1 day of, and 1 following day, which seems to do the trick.
I had an interesting chat with MO today about 125 Ibrance. Prompted by an earlier discussion here, I asked about reducing to 100 to minimize Se's (mouth sores, neuropathy, etc). She said research shows better results of continued success on lower dose after getting several stable scans. So I'll continue on 125 for now and revisit after, please God, many good scans.
Ashlyn, welcome, I hope you gain comfort and insight here as you chart your course. Sending you prayers, lovely.
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Tanya, Schoolmom...thanks for sharing. I saw the rad onc in GA and he is concerned about doing the treatment so close (mediastinal, hilar) to the last area from 3 years ago (breast, clav, axilary). Cites possible organ damage to heart and lung and esophagus. Said he is going to check with my old rad onc in Houston, talk with tumor board here and present my case next week. My Hou Doc is for doing it now, Ga Doc not so much. I guess my question is what if I don’t do it and just continue on Ibrance? I’m not afraid of rads although it wasn’t a picnic last time... worse than chemo for me becausof burns. Guess this guy has given me pause where I am usually “let’s do this!” It’s my third time around and to borrow the phrase “it’s getting real”. Guess all the decisions before weren’t that hard in retrospect. Not so much asking for advice on this because I know it’s the docs that have the whole pic. Just seeing it in writing helps me to look at it clearly and hearing from others helps me be more at peace, like I’m not alone.
Ashlyn, not much I can say except that I hate this for you. But your story gives me more to think about so thank you for coming back and telling it. I will trade for some prayers for you and your husband for your upcoming scan. You got this
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