Faslodex + Pablociclib(Ibrance) treatment combination -
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Naturegirl, I am so sorry to hear of your mother's passing, may she rest in peace. Hope the sadness fades and you find comfort in the many wonderful memories I'm sure you have of you mom.
Also sorry to hear you have had slight progression on this tx, but it sounds like you and your mo have a good plan for moving forward. I missed your posts the last few weeks too, but will look for you on the Ibrance thread. I hope the letrezole/Ibrance combo will be good to you.
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Naturegirl - my twin - get ready for some PMs as I intend to walk with you on this journey, and enjoy some gardening, etc. Pam - I am pounding down water with z pack, but still coughing like a Seaworld seal. Thoughts? The lung mets thread is a little light on anyone with pleural effusions I have had, eg being drained every 3-4 weeks since Xmas eve. Do you think that the talc method for pleurodesis makes sense to discuss with onc? I'm going to Boston on a biz trip first week of May to see my buddies at WGBH. So happy about that! Hope weather is clear - our client is filming "Stronger" about Boston bombing in MA right now.
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naturegirl, I'm so sorry about your Mom. There's never a good time to lose a parent, but somehow it always seems all the more unfair when someone is already dealing with the ups and downs of a Stage IV dx. I'm so sorry.
I'm glad that most of your scan results were encouraging, and hopefully the change in meds will zap that one pesky liver met very fast. I'll see you on the other Ibrance thread. (((Hugs))) Deanna
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girl, So sorry to hear of your Mother's passing......I still miss mine everyday after 8 years. Purr, I was on the Letrozole/Ibrance combo for 3 months and got muscle cramps and elevated enzymes. I took mine with dinner as after an hour or so it seems I would get sleepy on it. So it was kind of an additional sleeping aid as well. DBL my last round of shots I had a lot of pain in my left leg like she shot right into a nerve or something. It ached from my hip on down to my ankle for about a week! Then just my hip up until yesterday. And I go for another round on Monday!!! Lalady, Hope the chest congestion clears up soon. This is a very lonely disease. I would be a basket case without all you ladies.
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What do you do if you miss a dose? I didn't have dinner last night, therefore lost my routine of taking Ibrance shortly after eating. Remembered this morning though. Should I wait until tonight or take one now and one tonight? I think I recall reading it's best to skip the dose and resume at my normal time.
Amy
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according to the instructions that came with my Ibrance if you miss a dose you don't make up for it you skip it and go for the next on
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[cancer center] Pharmacy told me that if I forgot to take a dose I could take it later, but needed to be more than 12 hours apart. In other words, if I forgot to take it with dinner I could take it with breakfast so long as it was early, and to make sure to take the next one late in the evening. Don't know where they got that advice.
If you vomit after taking it you're supposed to wait until the next day. That's in the label.
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Faslodex shots - Back when I was doing these, I learned many methods to improve things from others who'd gone before me.
First, always warm the refrigerated pre-filled syringes. At my oncology center, they put them on the computer, but I preferred to put them under my arms or rub between my palms. Being a bit of a hippie, I also "good vibed" the medicine for best healing effect. Prayers too!
To relax the butt cheek where the injection will go, stand with all body weight on the other leg and roll the unsupported leg so that the outer edge of the foot is on the ground. Then, switch sides.
After the injections, it's best to walk and move and rub the bum to get the medicine moving. Less chance of bruising and hard lumps this way. Driving and riding in a car seemed to increase risk of sciatica.
Oh, sometimes I used arnica cream or ointment topically to prevent soreness and bruising.
Hope these tips are somewhat helpful for you too. I'm passing along what I learned from others.
healing regards, Stephanie
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I am over half way through cycle 1 of the Ibrance and doing well! I get labs on Tuesday to see how my blood counts are doing. I guess I'm surprised as this is much easier than I expected. I did bruise with the last faslodex injection but not a big deal. I read this thread a lot and you all give great advice.
Naturegirl, I too am sorry to hear about your mother.
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deanna & artistathea, thanks for your condolences. It seems each day gets a little harder. She was buried one week ago today. Yes, stage 4 and loosing my mother, just can't believe it all. I can say I was there for my mom and her respected her wishes till the end. She lived a beautiful and full life. She was 91 and 1/2 years of age and had been bedridden for one year. It's been tough. Deanna, see you on the Ibrance thread. lalady, yes, yes, do PM me! Thanks all! Hope Faslodex/Ibrance combo will delay/eradicate cancer for everyone!
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Wooo hoooo!!!! I am on day 21 of cycle two of Ibrance. Went in for my Faslodex shots this morning. Turns out they measured my tumor markers.
They're even!!! (A little down). I know that doesn't sound like much, but when they had been rising 30% a month for four months, halting the rise is a victory in my book. Guess palbo does act like a booster.
Not to mention my neutrophils were OK. Just under the Grade 1/2 border.
Now back to work.
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Wooo hoooo for you Pam! Hope the good news continues and glad you are tolerating Ibrance fairly well.
How are you doing Kay?
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Go Pam! "Even" or even lower rocks. You are trending in the best direction. Congrats. I start round 5 next Thursday.
And I am a "booth" girl at AFCI on Friday.0 -
Great news, Pam! "A little down" at this point is very exciting news!!!
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Hi Ladies!
Siri - i had that same problem, the coughing, when I was getting Zometa monthly. I was not on Fas yet. The dry annoying cough turned out to be nothing. I took (and still do) a Claritin daily. That seemed to help but I don't know now cuz I switch to Zometa quarterly. I hope it turns out to be nothing for you.
Now, for my question - I'm on torwards the ned of my 3rd cycle of Ibrance (day 17). About a week ago I noticed I was having a severe burning sensation with urinating. So, I thought UTI right away. Called MO and went and did a UA. Only showed 3+ leukocytes but no specified causing bacteria. Regardless, I was put on Cipro for 7 days. & days later, still significant burning pain and constant urge to pee. UA still shows no bacteria. MO doesn't me on another ABX, says it's probably from Ibrance. Any of you ladies experiencing UTI like SE's from Ibrance? I'm so frustrated cuz I thought I was going to be reduced to 100mgs. but MO says "no" despite extreme vaginal dryness and pain, chronic constipation, fatigue and my cell counts tank around day 16. I do CBC and CMP this Friday as shots are on Monday. I do have my PET/CT scheduled next thursday and figured between my CMP and that something might show up and help DX.
Maybe the vaginal dryness can cause the painful urination. I used organic coconut oil to help but I think that lead to the UTI issue. .... or not. My private parts are so irritated and angry all the time! I'm just so frustrated right now. I've been on treatment for 12 weeks between radiation, stupid daggers in my thighs and Ibrance. Oh and let's throw a Zometa in there! I think if the Ibrance can be lowered to 100mg, some of these issue might resolve.
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Hi ShelbyMarie,
How very frustrating for you, insult added to injury.
Vaginal atrophy/dryness and UTI-like pain are often side effects of the anti-hormonal drugs like faslodex and the aromatase inhibitors.
May also be related to the Ibrance and lowered immune system...don't know about that.
To treat the atrophy/dryness topically, I and other friends use:
Carlson Key-E® Natural Vitamin E Suppositories
I get it from Vitacost, though imagine they're available in natural food stores.
Hope this hint helps...so often it's these "little things" that oncologists discount that really affect our quality of life. And we all deserve to feel as well as possible, always!
warmest healing wishes, Stephanie
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Shelbymarie, there's a thread on BCO somewhere about "finding the cure for painful sex" or something like that. Their ideas might help.
Lalady, don't forget the comfortable shoes!
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Thank you Pajim and Longtermsurvivor - I'll check 'em out!
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Oh yes, the painful intercourse topic...just might work for painful peeing too.
https://community.breastcancer.org/forum/8/topics/...
best healing wishes, Stephanie
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Hi ladies! Pam......yippee for stable tumor markers! I had my first blood tests this week on day 15 of cycle 1 of Ibrance. Neutrophils were low....1000. Onc said to stay on med and see if they rebound during week off which starts on Tuesday the 26th. Does anyone know how low 1000 is??? Is there anything we can do (supplements, diet etc) to help neutrophil count? I've looked a little bit online and seen maybe zinc and a high protein diet but nothing seems proven.
Also, I can't seem to find the balance between constipation and diarhea. I take stool softeners everyday, but then that leads to diarhea. So I back off and then I'm constipated! I can't seem to win! Any ideas?
I see the doc on Monday and get third set of faslodex shots.
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1000 is the border between Grade 2 and Grade 3 neutropenia. 2000+ is normal. The grades go down in 500s.
No idea if there's anything diet-wise we can do to grow more neutrophils. Our bone marrow makes them. I guess they express CDK4 or CDK6 since palbociclib either kills them or prevents them from being created. I'll have to do a little research on that; but I assume if there it would be lore (and recommended).
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Pam - I am back from my 3 days as "Booth Girl" at a trade show here in LA. Wore flats and hair halo - also glad it's my week off ibrance + fas. I start round 5 on Thursday. For coughing my MO prescribed some syrup with codeine which has helped me sleep at night, and like Shelby I am taking a daily claritin. Kay - how are you holding up?
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lalady1, Are your lungs feeling better now that you're not coughing them up??
Kay, my GI problem is always constipation. I have a very slow bowel. I take a docusate sodium (Colace) every day which keeps it in check. They said diarrhea with this med and I laughed in their face.
What about taking the stool softener every other day? In the morning? Or, don't take it at all, and every few days throw down a senna or two. Unless the constipation is making you very uncomfortable the latter would work. Last idea is to take a fiber supplement instead. That would just provide some bulk.
Or (and I hesitate to mention this because I don't want to insult you) -- check the bottle of stool softener? Is it possible you accidentally picked up something that has something besides docusate sodium in it? Sometimes it comes with senna.
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Kay, good advice from Pam. You also might try drinking a glass of fruit juice 1st thing in the morning. Apple/cranberry has been working for me, but prune juice may work better. If you have never had it, I know it sounds gross but actually doesn't taste bad, just different.
Good luck on your last loading dose, hope the nurse is good and you have little or no pain.
Lalady, Hope you have a nice restful weekend after being booth girl, you deserve it!
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lalady.....I am holding up really well. The side effects aren't bad, but a bit nervous about the neutropenia thing. So, what is the difference between colace and senna? I have both. Is one stronger than the other? Should I stick with one or maybe rotate? Colace one day and senna the next? I will ask the doc tomorrow. My oncologist retired so this is my first meeting with my new one. Wish me luck!
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Good luck
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Kay, Colace is a stool softener. Senna is a [mild] [stimulant] laxative. Colace is much smaller potatoes.
Further explanation --
The large intestine's job is to pull water out. In my case because stool moves slowly through my bowel, the large intestine has too much time and does too good a job. Colace brings water into the stool. Bulks things up and makes it easier to go.
Senna is a stimulant. The large intestine moves things along using contractions. Senna creates more of those contractions. Opioid pain medications suppress these contractions which is why they recommend taking senna with percocet.
When you read all the literature which says not to use laxatives more than X period of time because your body becomes dependent on them, they mean senna, Miralax, stuff like that. Colace you can take as long as you like.
My end suggestion is to start with one Colace a day. Make sure whatever you buy only "docusate sodium" in it. Give it a week. If that doesn't work, you can try taking senna every so often.
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I saw my oncologist yesterday. I liked her a lot. She was very down to earth. The plan is to continue zometa on the every 3 months schedule. Stay on the Faslodex/Ibrance combo and scan again in August/September to see if it's working. It's my week off of Ibrance so we will check my blood on Monday before starting cycle 2 on Tuesday next week. She said if my white count isn't back up she may reduce the dose of Ibrance.
I have been super tired the last 3 days. Anyone else experience fatigue at the end of the cycle? How long did it last?
pajim......thanks for the colace/senna explanation. That makes sense.
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Kay - I was tired at end of cycles in the first 3 rounds, then got better. Watch your blood numbers, that tells a bigger picture. I needed a transfusion during cycle 2, so that was a wakeup call to me (I was Zombie-tired). Pam - my coughing is much better, what is crazy is that my PET showed clean lungs! But I have pleural effusions building up in my left lung, so getting it drained each 3-4 weeks. That hurts somewhat as they go in through a rib-space in my back and suction the fluid out. Having said that, I am working full time and spend Fridays working from home. Helps a lot. Rolling out for round 5 on Thursday.
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Hi very inspiring lalady. Keep rocking
I'm taking faslodex and Ibrance I'm trying to find information on long term.
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