Mar 6, 2019 01:48PM Cure-ious wrote:
Ann & Masonsma, Which probiotics? Alpelisib will hopefully be approved by FDA soon, so Ann maybe you can move to that if Ibrance quits (but I bet it won't!!)
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I am waiting for my pills to arrive and fearful of starting a chemo after almost seven years of anti-hormones. I immediately started looking for info on this site, and the Afinitor topic was started in Jan. 8, 2012 with 35 pages of comments to go through. Do you think it is possible to start a new topic now that this med combination has been just recently been approved by the FDA?
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Mar 6, 2019 01:48PM Cure-ious wrote:
Ann & Masonsma, Which probiotics? Alpelisib will hopefully be approved by FDA soon, so Ann maybe you can move to that if Ibrance quits (but I bet it won't!!)
Mar 6, 2019 03:46PM - edited Mar 6, 2019 04:06PM by ann273
Thanks Cure-ious! I really hope so!
When I started afinitor I was living in India and the doctor prescribed a generic daily probiotic thats available over the counter. I live in the US now and when I came here I just got the Digestive Advantage Daily Probiotic. Another thing I'd like to add is that the side effects subsided with time. When my markers went up, my onc moved me back from 7.5 mg to 10 mg and nothing about my quality of life changed. Moving to 10 mg gave me 2-3 more months! I remember when I'd first started on 10mg, I could hardly get off my bed (due to sheer weakness and the inability to eat) or even drink water.
I really hope Ibrance continues to work! Since there is some literature that suggests Ibrance after Afinitor is not the most effective treatment and since I have the FGFR1 amplification, I even asked my Onc if we could try something else, that but he took a shot with it because I also have the CCND1 amplification. My markers dropped the first 4 months and plateaued at 37. They're still around the same, just went up by a point or two. Im so used to Tumor marker fluctuations that I'm hoping for the best.
Mar 6, 2019 05:32PM Nkb wrote:
Ann, cure-ious, mason etc. thanks for these good stories- lifts my spirits. I eat siggi yogurt with 5 kinds of live lactobacillius every day. Should I add probiotics?
My MO said to do the mouth swish four times per day for 8 weeks and then I could back off.
The UCSF doc said that one if the reasons for Ibrance failure was upregulation PI3K pathway- so hoping this works. She also said that it was definitely doable to use apelisib after progression on everlolimus.
How soon did you get a dose reduction?
Mar 7, 2019 09:11AM masonsmawmaw wrote:
Curious- I don't remember the brand name, but I bought the probiotic "gummies" at Walmart and take 2x day. After my 9 day break off 10mg Affinitor, my onc also decreased my dosage to 7.5mg. Maybe the combination of these two things are what helped me get back to my new normal. During my break, my mouthsores disappeared and they never came back when I restarted the lower dosage even though I wasn't using the mouthwash. Happy to say that I'm feeling about as good as I did during my 3 1/2 years on Ibrance/Faslodex. That being said, I did spend a few days in the hospital a couple of weeks ago. I noticed increasing shortness of breath over about a week so I went to the ER. Was admitted due to chest pressure and low oxygen readings. I do have a heart condition (due to chemo in 2001), but heart testing turned out okay as well as a scan for a blood clot. Still don't know the underlying cause so I am seeing a lung doctor in a few weeks. I came home on oxygen but I'm only using it at night while I sleep as my oxygen tends to drop below 90 if I don't. I hope that this isn't related to the use of the combo (pneumonititus (sp) was ruled out also). Scans first week of April so praying for positive results. Prayers for no SE and good scans for all of you too!
Mar 7, 2019 10:45AM ann273 wrote:
masonsma - Yes, probiotics gummies work well too! I've tried those and used to just keep them at my desk at work, so I make sure I pop them everyday. The digestive brand ones even taste nice :)
Nkb - I'm not sure about the concentration of probiotics in siggi yoghurt. Maybe you can compare the labels? I needed to take an entire daily serving as indicated on the probiotic packaging.
My onc reduced my dosage to 7.5 about 1 month into taking afinitor. 10mg was just too much for me. I was on 7.5mg for 3 whole years with 0 side effects once I started the probiotics.
Mar 7, 2019 11:20AM Cure-ious wrote:
Nkb, That's good to know that Alpelisib can be added on after Affinitor!
There is a new discussion on what to do post-Ibrance on OncLive: https://www.onclive.com/publications/Oncology-live...
They make a good point to use targeted drugs as much as possible before moving to chemos, but of course it depends on the conditions, and one can move from chemo to targeted drug for maintenance. However nowadays the "crisis" has to be really bad before moving to chemo because some of these drug combos can act very quickly
Another interesting point is that some oncs are moving to try immuno combos after hormone therapy, those would all be in clinical trials
For those responding to AA or Alpelisib, there is good data that progression on those drugs, as well as many other treatments, does involve boosting the Aurora A kinase, so that Alisertib or Alisertib-Keytruda combo might be beneficial at that point (and vice-versa)..
Mar 7, 2019 11:37AM ann273 wrote:
Cure-ious I have also been told that Alpelisib can be used after someone has progressed on Afinitor. I also have the P13K mutation so a lot of my questions revolve around Afinitor and Alpelisib. I was so upset to learn the FGFR1 amplification results in a lack of response to Alpelisib even when you have P13KA. Alpelisib seems like a great drug, and Ive been hearing good things about it from all fronts.
Mar 7, 2019 11:47AM Nkb wrote:
MM- that is scary- I hope that you are feeling much better now! If it wasn't pneumonitis I wonder what it is?
The UCSF doc did mention a trial for oral Taxol, but, said you lose your hair and she didn't think that I needed that.
I think it was Joyce O'Saugnessy who said that if you had been off an AI for less than 2 years before recurrence she uses fulvestrant with the CDK4/6- that is why I got Fulvestrant with Palbo- so couldn't switch to that after failure. I guess that they are studying that also. (keeping the CDK and switching the AI to SERD) would be nice if that worked.
I am getting nervous about the 10 mg now- well- I will try it-and decrease if necessary- I wonder if I should make any plans on the first week I start it? still waiting on the pharmacy
My ANC is almost normal after being off the Palbociclib for 2 months, but, the HGB is lower- 9.7- I found that odd and a bit worrisome. My lipids and blood sugar almost seem too good- maybe the lipids are due to my total lack of estrogen.
I will get some probiotics.
Mar 15, 2019 07:52PM - edited Mar 15, 2019 09:14PM by Rt_chicago
Mar 15, 2019 08:27PM Nkb wrote:
Started A/A last night. 10 mg. Also the mouthwash 3-4 times per day. Was scared to swallow them.
How is everybody else doing?
Mar 16, 2019 09:24AM Rt_chicago wrote:
I just found out y90 didn't work. Yet again progression in my liver and possible lymphatic involvement in my abdomen. I see MO Monday to discuss results further. His preference is taxol.
I just can't get my head around taxol and complete hair loss again with no end if it even works. Then on to others that are even more horrific. I feel mutilated by this disease.
I was diagnosed in 2015 with stage III. HR/PR + Her2 -
33 rounds of radiation
Hospitalized for infection
Failed implant (basically my skin tore open because of radiation.)
DIEP FLAP reconstructive surgery
May 2018 recurrence with mets to my liver
Y90 to right lobe February 2019
Scan shows progression March 2019 in liver and possible lymphatic involvement
I am devastated and tired of fighting this beast. My family has been through enough. My gut says go live life while I feel great and deal with the symptoms when they come. I feel selfish and afraid. Though my faith is strong and I'm not fearful of death it this suffering part that messing with my mind. 😢 I'm grieving the loss of not being part of my kids futures and for my sweet husband I have no words. Thanks for allowing me to see into each of your battles.
Mar 16, 2019 10:31AM jobur wrote:
Ann273 Its so encouraging to hear A/A worked for you for 3 years! I got 3+ years out of Ibrance with Faslodex, hoping you will get years out of Ibrance too!
Angie How are you feeling? So glad the mouth sores have not returned and interested to hear you mo dropped you to 7.5mg. I also have a scan the 1st week of April, so we can be scanxiety buddies.
nkb It is truly scary starting a new tx and not knowing what to expect. You can read everyone else's experience but still don't know how your body will react. I think it helps to remember you are the boss and can stop this tx or reduce the dosage if it gets to be too much. Wishing you minimal se's and excellent results.
Cure-ious I'm so glad to see you posting here even though you are not on A/A cuz you are so darn well informed and smart! I learned a lot when I was first dx'd, but did not keep up with all the new tx's during my long run on Fas/Ibrance, so your posts are so helpful! Thank you for sharing your smarts here.
Michelle I can hear the anguish is your post and I am so sorry for all you have already gone through. I don't know what treatments you have been on since being dx'd stage 4, but there are many to try and I would hate to have you give up treatment if you can still have good QOL and extend your time with kids and DH. If you don't want to do taxol, tell your mo you want to hear about other options. If he/she is set on taxol, go for a 2nd opinion. I am with you on being more afraid of pain and suffering (and what that would put my DH through) than dying. But I don't think you need to do either just yet. Please hang in there and maybe download Bestbird's guide so you can see what tx's might be effective for you. Also, keep in mind the treatments for mbc tend to be much gentler than those you had with early bc. What you are feeling is totally normal after learning you are stage IV. We are here for you and you will find plenty of support and info on this forum. Sending a gentle hug.
Mar 16, 2019 10:43PM Nkb wrote:
Michelle- I totally get where you are at. I think the hardest time is when you first hear that a treatment no longer works. It is disheartening and feels so out of control. I also have the most mental anguish over how my demise will affect the kids and DH. Also, I don't want to suffer esp for no gain. Losing your hair is a very primal experience and a privacy issue that was much harder than I thought. You may want to find a good grief therapist to process your feelings, or a palliative provider might be helpful. Lots of good advice from Jobur.
Thanks Jobur- dose # 3 down the hatch tonight.
Mar 20, 2019 07:37PM Eljaywest wrote:
I haven’t been on this website for ages but thought I’d share. I started AA last June. It was a very last resort and my onc had given me two to four months to live. She sent a note to her colleagues to ask if anyone had any suggestions. That’s when she decided to try me on the AA. It’s been very good. I had one bad episode where my throat was so sore that I lost my voice. When my onc asked if I was using the steroid mouth rinse, I said no, I don’t have mouth sores. She said your throat is part of your mouth! Who knew? Lol! After two days of rinsing 4 times a day I was back to normal. I haven’t had to take it for the last two months. You do actually get used to it. It’s horrible at first but I got used to it.
But other than that and fatigue I’m managing well and thankful for every day. We are going to the desert for three weeks. I can’t go for any longer as I have to have labs and meet with onc every month. Also, I can’t get travel insurance so that’s a bit scary.
I lost my hair during chemo more than two years ago and I’m still bald. Hate that part.
Mar 21, 2019 01:55AM Nkb wrote:
Eljaywest- this is very good news indeed. Sounds like you are one of the success stories I have been looking for. What dose are you taking? And what hormonal do you take with it?
I’m sorry that your hair never grew back- I’ve heard that that can happen rarely with taxotere.
Mar 21, 2019 02:32PM Eljaywest wrote:
I’m on 25 mg of aromssin and 5 mg of afinitor.
I think the hair not coming back is due to brain radiation two years ago. I’ve got a big bald spot and then sparse hair at the sides. I look like a little old man 👴! But I have a few wigs all different colours.
Mar 23, 2019 09:54AM jobur wrote:
Lin and Lyndal13 Thank you for stopping in with your success stories, we really need to hear them! Hope you are able to stay on this tx for a long time to come. Lyndal13, 3 1/2 years is awesome! What dose of Afinitor are you on? It seems like very few continue on a 10mg dose.
Nkb How has your first week on this tx been? Hope se's have not been severe and you are coping with whatever is going on. The first couple weeks/months are the hardest, not knowing what to expect. Cheering you on!
Mar 23, 2019 12:48PM Grannax2 wrote:
Ladies just dropping by, I haven't read anything but I wanted to warn you about something.
I'm in the middle of a family crisis because of an event that happened shortly after I got off of AA. Please know, I'm thrilled knowing that some of you are seeing benefits and have not had the SE I had on this TX.
My DD and I got into a fight in the car , no hitting, mostly words and actions that should never have come from me, never before. I won't go into details, but I acted out in ways I never, ever have before. Now, I'm in the midst of a family crisis so painful I can hardly bare it. Yes, I do blame AA. Did you know one of the SE can cause huge mood changes? Probably not, I didn't. It is written in the rx instructions. Along with so many others, most of which I had. Did you know it can cause incontinence? I didn't. Those events caused my old MO to order an unnecessary brain MRI. It went away as soon as I went off of it. I had so many severe SE, including extreme spikes in blood sugar my PCP said Call me as soon as you get off this drug and I'll get you off of insulin but you'll have to be on insulin the whole time you're on this drug. That was the deal breaker for me, I stopped taking the pill that night. I've kept my Aic in normal range for fifteen years with oral meds and Trulicty. It's back in normal range now. Did you know AA also causes your lipids to skyrocket? I didn't. It's normal now, too. Am I back to normal now a full six weeks after stopping AA? Yes except for the possibility of losing my family.
This drug should be taken off the market. It is cruel. I'm saying that because it happened to me. I've read of too many here it has happened to, and only a fortunate few who respond .What are the lasting SE of this nasty drug for many of us? Who knows? But, the one I'm having right now is the worst thing I have ever experienced in my life.
Also, my PCP wrote in my medical records that I am allergic to AA. My new MO will see that on my portal. I see my new MO on Monday, all of my mets are growing as of December. So, I expect I will need to be put on an IV chemo to get some fast shrinking of my liver mets. Scans next week.
Mar 23, 2019 01:31PM HLB wrote:
Grann can't your family give a little bit of leeway based on what you are going through?! Geez they are rough.
Mar 23, 2019 10:06PM Nkb wrote:
Grannax- I am so sorry all of this is going on! I hope that you can mend all this very soon. Wondering if a family counselor can help everyone heal back together. Everyone is different in how they respond to meds- part of why we get so scared to take them. It does seem like diabetics have a very hard time with this medication. I did know about all the side effects you mentioned and had baseline labs and will be followed monthly with labs. I don't have cholesterol of DM problems right now- so hopefully it won't happen.
Lyndal- I am thrilled with your sources on AA- have been looking for success and here you and Lin are!!
Jobur- I have taken 10 pills now. I have some nausea (ginger works) fatigue, headaches, and weird rashes. Also since I am back on an AI- the muscle/joint stuff is back, not as badly as the first time. Using the mouth wash four times per day and so far no mouth sores, though I've heard they come later? No weight loss or poor appetite so far.
How are you doing?
Mar 24, 2019 01:06PM Eljaywest wrote:
grannax so sorry to hear your story. Did you explain to your family that it was from the drugs? I’m sure you did but that so sad that they aren’t being more understanding. It’s not your fault.
NKB they say the mouth sores are usually early on in the treatment and then go away and you can stop the yucky mouth rinse. Maybe you won’t get them!
I also have weird rashes. On my arms but now also big red spots on my face. Onc gave me ointment but it’s sure not working very quickly. I’m off to get a pedicure now. At least my feet will look nice and maybe no one will notice my spots
Mar 24, 2019 07:33PM Grannax2 wrote:
Thanks for your encouragement ladies. Yes, I am going to counseling every week. It's helping. All of us are going to meet with her on April 6 to hopefully get some resolution.
Meanwhile, just when I had been so anxious I was going to lose my family, I got encouraged yesterday and today. I got to go to my grandson's State Gymnastics Meet. I got to visit with my son and rode both ways with my daughter. No fights. I did explain to her the drugs that were still in my system that day plus another one. She seemed to really listen. Then she came over to my house today for several hours. We didn't talk about IT but she seemed more relaxed with me.
Progress. PTL. Tomorrow I go to my new MO. It's a relief to finally be with a Breast Cancer Specialist again.
Mar 24, 2019 11:41PM Greenteatwo wrote:
I pray the best for all of us in this journey. Grannax, I understand your hatred of this drug , from what you have shared and respect your point of view. I am benefiting from this drug. It has kept this monster stable for the past 10-months for me, it's given me a respite, relief and just a break from from the infusion SE's. Those ten months are a gift to me, my husband, three children as three grand children that I don't take for granted.
My opinion is my own just as yours is yours. I am grateful the drug was available tho me. We are in this together, we take risks when we agree to a medication sometimes we reap a benefit .
My sincere Best to you and your family through this journey.
Mar 25, 2019 12:11AM - edited Mar 25, 2019 12:13AM by ann273
jobur, thanks I wish you good luck with afinitor! Ive been having some tumor marker fluctuations on Ibrance (the last one was a rise after a drop so my MO wants to do a scan. He was not happy with the result and it showed on his face. Sigh, its been a long week). For anyone starting afinitor, I started with 10mg and in the beginning it was a tough treatment. We played around with the dosage and in my 3 years on afinitor I was on 7.5 mg most of the time. If I felt a sore coming, I'd skip it for a day. I made sure I didnt miss my daily probiotic. Missing a probiotic coincided with the occurrence of a sore. I've even heard of patients who did well on 5mg of Afinitor. and someone who is on it her fourth year at 5mg.
Another thing that helped me with the occasional sore was using Canker Rid (sold by Durham's Bees on Amazon). If you search Canker Rid on the forum, you'll see a lot of early users of AA that benefited on it. It stings like hell when you dab it on the mouth sore, but helps to heal the sore fast and numbs it so you can eat/drink.
Mar 25, 2019 09:12AM HLB wrote:
Grann I'm so glad things are going better! I think a big problem with this drug is the dose. Why do they start high and drag us through the mud instead of starting low and going up if needed? I get so mad about stuff like this!
Mar 25, 2019 10:24AM Nkb wrote:
Ann273- I think you are right about the dose- in Oncology they always seem to start high and go down.
by the way my TMs fluctuated the whole time I was on Ibrance and it was working well for 18 months. When they went up 3 months in a row - it was a progression. so good luck to you that it is just fluctuations!
Mar 26, 2019 12:05PM - edited Mar 26, 2019 12:10PM by ann273
Nkb, I'm hoping against hope to be able to stay on Ibrance a little while longer. Thanks for letting me know of your experience with TMs.
I know I keep saying this and am only speaking of my experience, but my first month on afinitor was the worst month in terms of side effects in all of my years of treatment. The dosage adjustment and few easy pointers like probiotic a day changed my life. I had 3 amazing years, most of the time I didnt even think of Cancer. I traveled, work full time, went on hikes. I'm 33 right now and I can say that I truly felt as good on that treatment as someone who wasnt going through any of this.
That being said, I understand that we are all different and some of us have a better time than others on these medicines. Good luck to all of you!
Mar 26, 2019 11:43PM Nkb wrote:
Ann- so far things are going pretty well. I have taken 2 weeks of the 10 mg and the exemestane. The first few days I had fatigue and some nausea. Weird rashes. But, all that is better. I think the aromasin is causing me more issues. I have been on an anti estrogen for 7 years - except for the 2 months recently with no meds. My muscles and joints felt much better during those 2 months.When I took arimidex I took Motrin every night. Haven’t done that in 2 years- but, now hear that nsaids are good for you so may go back to it if my renal function stays ok on the afinitor.
I felt good on palbo so I really hope you get more time on it. I started not to think I had cancer also!