Faslodex + Pablociclib(Ibrance) treatment combination -
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Thanks, Pajim. Good to know I'm not crazy
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Has anyone had coughing up blood on this treatment? No other symptoms, feel fine. Coughed and a bright red loogie flew out lol! Thanks, Heidi
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I am on Ibrance with letrozol. I've never coughed up blood. Ibrance does mess with membranes, blood clotting etc. Many people get skin rashes. You may be dealing with some kind of internal skin rash. None-the-less, my first thought is to go to good primary care doctor and assume that you are dealing with something else. It is very important not to assume every symptom is a side effect because you will likely miss other issues. They may be indirectly caused by the treatment, like a UTI, but they need to be treated.
>Z<
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Thanks Zarovka, I'm still feeling normal. I also started hypertension meds a week ago but I cannot find it as an se for anything that I take. It hasn't happened again and I'm wondering if it just from my nose and going down the back of my throat while asleep. This happened at 5am. I hate going to the Dr so much already. Going to blow it off for now unless something else happens. Again thanks.
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I'm totally for blowing it off unless it happens again. It could very well be broken blood vessel in your nose (common) draining into your throat.
>Z<
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When I first started on this combination, every time I sneezed or blew my nose, I was sneezing up blood. It went away after round 1.
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That's interesting. I'm on the 16th and this is the first time. I think it might have to do with stuff I just started taking. Like BP meds and coq10. Either that or lung cancer!!
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You probably should discuss this with your doctor if it continues to happen, probably nothing if it is a one off.
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Nkb,
I'm on a trial that compares 125mg to 100mg dosages of Ibrance + Faslodex. So hopefully, there will be some light shed on the efficacy of these dosages. To continue on my next cycle in this trial, my Neutrophil count has to above 1.0. For the last 4 cycles, I've had to stay off an additional week to get my Neutrophils above 1.0 so they reduced my dosage down to 75mg. I can still stay on the trial. Hopefully, this stuff will still work at the lower dosage.
Hugs, Susan
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Susan, It will be interesting to see the results of the trial. I suspect that they will determine that the lower doses are as effective as 125 mg, but we shall see. When my dose was lowered to 100 mg last year after only one month on Ibrance. I asked my MO if the lower dose was as effective as the highest one. He was honest and told me that they didn't know definitively since that comparison was not part of the original trials. From my own experience, I would say that the lower amount of Ibrance works quite well. I hope you find that the combo works well for you for a long time. Keep us posted.
Hugs and prayers, Lynne
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SusaninSF- I have been on 100 mg for cycle #2 and #3 and have to wait 2 weeks to have my ANC get to 1.0 This time it was .9 after one week off- so will take another week off. Maybe next time I will only need one week off! I asked her if she was concerned that I am basically 3 weeks on and 2 weeks off and she said no. After 3 months >80% of my extensive bone and bone marrow mets resolved and the rest was stable and no new mets- so 100 mg is working for me. I wonder why they decreased you to 75 mg- the literature says to do that if you are grade 4 neutropenic after the week off (<.5). My doctor says that she has many patients doing well at each of the 3 doses.
I am interested in what your study shows, so please keep us informed. Others on this board have said that the different dosages have very similar efficacy.
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Hi everyone. I am new to this combo as I was only diagnosed with metastatic recurrence of breast cancer August 22, inoperable and incurable thus stage IV though it is not distant mets. It was diagnosed as I had some lymphedema late April on a flight en route to Nepal to lead a trek. It was kind of like, many women get LE years after initial treatment, so will see what we can do with this. By June I had tingling and burning and pain from my scapula but not bad. MO ordered MRI and a few other things second week of June. June 26 I had all my reconstruction (had a re-do in Dec./16) but those nerve symptoms persisted and worsened to the point by the third week of July I had lost considerable hand strength. MRI July 31 showed enhancing tissue, chest CT with contrast a few days later showed a lump. Core biopsy August 17 and results August 22. Immediately the cancer agency went into overdrive. My tmour on the chest wall not far from the axilla and suprclavicular is entangled with the brachial neruovascular nerve bundle thus the inoperable part.
I was on Ibrance by August 26 and Faslodex August 30. I have had the 15 day Faslodex and on my week off now and 29 day Faslodex is next week. My question (which I plan to ask my RO today after my 8/8 palliative radiation treatment) is whether I can miss a monthly Faslodex injection in February. The way it lines up right now makes it difficult for a planned NZ trip.
Nice to meet you all and when I have more time I will read back and see your stories. It has been a whirlwind to say the least in the past couple of months.
Marian
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Hi All,
I'm new here too, I haven't been able finish filling out my treatment profile. I was diagnosed stage VI in August, bone mets & lymph nodes. The worst of my bone mets, (hip, spine & shoulder) have been treated with radiation with positive results. I've had 2 rounds of the faslodex shots and was on the Ibrance for 11 days before having to quit due to SE's. I haven't read through all this forum but my question is, has anyone else had horrible chest pain? It's very difficult to eat and drink, I need to pound/pat my chest or back to get anything down. I've been off the Ibrance for 5 days now, maybe that's not it? They have done throat cultures, no bacterial or viral infections. Any input,information or advise would be greatly appreciated.
Lester
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Welcome, Lester2017.I have had chest pain off and on. Also had feeling that food is "stuck" in throat on first round but not so far on second. Doctor prescribed pantoprazale in the morning and Zantac at night. I also started eating smaller meals as I found thatfeeling happened during large meals.
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Lester, could it be rads to the spine? Does the spine area line up with where the pain is? I had awful esophagitis from radiation that only started a week after the rad were completed.
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I'm sure Ibrance does slow down digestion, I have to be careful not to eat too much at one sitting and for the day since it seems to catch up in the evenings. Chewing antacid chews helps some.
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Good Morning Ladies!
I'm eating small meals and am taking pantoprazole to reduce my stomach acid. HLB, you may be onto something. It feels like everything I eat and drink goes down to the point in my esophagus that lines up with where my spine was treated, then it moves back up at me. Do you mind me asking how you were diagnosed & treated, and how long you had to suffer with esophagitis?
You Ladies are the best, maybe I can do this after all.
Lester
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Hi ladies, wanted to chime in regarding Ibrance dosage. After 5 months on treatment I only managed one full month of Ibrance at 100mg.
I just finished my week break after having good neutrophil counts and started back on 100 mgs. But, I decided to ask the oncologist to drop me down to 75 mgs. Even though my blood count is acceptable I have had sinus infection and or fever and or UTI most of the past 21 days. I am hoping the reduced dosage will help my immune system bounce back.
I have a friend who has been on 75 mgs the last 4 or 5 months and her liver mets have shrunk nicely. So, I'm feeling pretty confident about the lower dose doing the job.
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Lester, I have esophogitis from GERD but after JFV's comment I wonder if rads contributed. Mine causes terrible coughing which I control with hydromet
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JFV- I have so far had to wait two week to get to an ANC of 1.0 for every cycle. This time I got close at .9 after one week off. I'm going to stay on 100 mg for now since it is working and my MO is not concerned with 3 weeks on and 2 weeks off. She has told me that she has people at all 3 dosages who are responding well.
I hope you find the 75 mg much more tolerable.
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Good morning Lester! I was dx'd with Mets a little over 5 years ago, which was just a few lesions in the spine. I did letrozole for 2 years. Three of the lesions woke up so to speak so in my research I came across a Dr in FL who was doing high dose sbrt for people who had limited Mets. He is trying to cure people who have one or very few. The treatment was once a day for 5 days then I was done. I had nausea the whole time because one lesion was L2 I think. The other was T6 and the feeling was like a lump not letting the food pass. It was in the upper chest and it only lasted about 5 days but it was miserable and even swallowing spit was painful. I found some expired generic xantac in my stash and that helped SO MUCH. I was on here whining to anyone who would listen about my painful swallowing! I think it made my esophagus raw and inflamed in that spot and when I took the med to keep the acid down it was a lot better. I think the acid was really irritating it. It was not just the lump feeling but very painful, so I'm not sure if that's what you are experiencing. Or maybe if you had standard rads it would be not quite as severe. But if it lines up with the spine that was radiated it's definitely a possibilty. What's strange is that it only started a week later. Was not expecting that at all.
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Thanks HLB, It sure sounds like we had similar symptoms & very close to the same area, T6, radiated. I'm to the place where I can only swallow liquids, small quantities & very painfully. I have a barium swallow test on Tuesday, at this point I'd put $$ on it. I think the damage from regular radiation is slower to get you, hopefully it doesn't last too much longer, it's been a week today. I wonder if the Ibrance slowing down my white cells had anything to do with it? At any rate, thanks again & I hope to get back on track with the Ibrance soon.
Leste
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Thanks for the info NKB! I would love to stay on ibrance, have it slow my cancer and feel sort of healthy. Ah what crazy dreams I have !😂
Lester Hope you feel better soon !
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Lester when did the radiation treatment finish? It really sounds like it could be that. I remember when it started it seemed to get worse every day before it started to get better, and got better very quickly instead of gradualy. The standard rads covers a bigger area, the sbrt is more intense but pinpointed. I'm not sure which would be worse. Hopefully it will clear up soon if it's already been a week. Did you try the zantac? I was so relieved when I took that. I don't think my food was coming back up, although it felt that way. It would hit that bad spot and seem to go really slow, hurting the whole time.
They really should tell us what to expect with this kind of thing. I was led to believe I would feel nothing and then be on my merry way with my dead tumors! The very first night I vomited violently. He seemed surprised by that but I had to take Zofran for about 2 weeks. Anyway I hope this clears up for you soon.
I took Ibrance and faslodex for 16 months and my blood never went low and the only se I had was hair falling out, but not enough to be noticable. Hopefully it will go very well for you.
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Hi I will be starting Ibrance in the next few weeks as soon as I get ok from insurance. I has Faslodex and Xgeva yesterday. After reading as much as I can absorb right now I am concerned about neutropenia. I have a low white count to begin with from an underlying condition I discovered during ordinal treatment. I gave myself Neulasta during Tax. This caused me to stop AC after 3 rounds 12 years ago. Three hospitalizations withinfection.just wondering if neutropenia starts during first round. Is it cumulative? Mo wants to add this because of lesions at C2 C3 last PET in May. No tumor marker rise.
I guess I will be taking another step forward on this road.
Maire
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Good Morning!
HLB, the way you describe the pain mirrors mine exactly! There is an an article I found from 2005 Cure magazine,it talks about how this can easily happen and that there is a drug that they could give you to protect your esophagus. (I'm unable to link the article (?), but easy to Google it)
It really angers me that doctors that are treating patients don't take the time to research & share with you the possible side effects you could get.😡 That's what Marie67 wants to know, someone here will have the answer for her, the forum is wonderful.
My last rad was on 9/12, there is/was small met in my spine that he felt was necessary to aggressively treat, which I know I'll be grateful for later! I'll let you know results of swallow test & hopefully we can help others who read this.
Lester
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Maire, I think I am unusual but I never had low counts for the 16 months I was on ibrance. Also, the onc told me that even though people get low counts they never saw anyone get an infection from it. He thought it was strange.
Lester it sounds like this is the right time for that issue to be happening if it's working the same way mine did. Hopefully it will be over in aa few days! I am very curious to know how the swallow test turns out.
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I logged in to share a Faslodex experience but after reading the radiation-related posts, I had to write more. I'm so mad to read about other people's pain after spinal radiation. I was told to expect mild esophagitis for two weeks whenmy spine was radiated. It was a full year of soft food and throat pain. The painful swallowing continues to this day. It caused my voice to sound funny at times. Hoarse isn't quite the word. My son says my voice gives him the creeps want to talk, lol I've seen specialists, who tell me there's nothing that can be done, and they have a tone in their voice which lets me know I'm not the first patient they've seen with radiation damage. My FIL lost his ability to EAT and swallow because of radiation damage. He is an active man who has to be tube fed. I'm not anti-radiation. I just get angrier and angrier the more I hear. Of course if I talk to a newly diagnosed person about my POV, it might appear that I'm exaggerating the damage. The damage is there.
I had Faslodex shots a couple of years ago. Didn't help at all but I need something to go with Ibrance. The aromatase inhibitors were totally fucking up my QOL. I got my first Faslodex dose 2 weeks ago at Sloan-Kettering. It hurt like hell. Worse than I remembered. The nurse went very slow. I warmed the vials. Had to ice my backside for a couple of hours after. Bloody bandaids.
So today, I go to my local hospital for Faslodex. Once I'm back in the infusion room, I start to like pick up the vials to warm them. The nurse tells me they are already warm; she had them out for two hours. I touched them. She was right. Yay. She puts the needle in a little higher than the previous nurse did. Right side was no pain at all. And she didn't take 2 minutes to finish. It was a minute, tops. I'm a little sore on the left side but it's tolerable. It's interesting that the quickie Letrozole shots didn't hurt nearly as much as the slow ones 2 weeks ago. I did try a little harder this time to prepare. I tried to hydrate (difficult when it hurts to swallow liquids) and I took a Claritin.
Haven't received my Ibrance yet. I successfully lobbied my MO to start at 100 mg not 125 so I'm waiting on a second delivery from the mail-order pharmacy. I've been on treatment for 5 years and have never been able to take a full treatment dose of anything. I've always done 1/2 doses or every other day. I'm reading other peoples notes and now I'm wishing the doctor would start me on 75, I don't know why my doctors want to see me in the emergency room before they will try to do things my way.
Gentle hugs to all.
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Tarhleel, I am calling myself a faslodex survivor. Each shot is a new experience for my body. Different pains, different spots and I feel down in the dumps for a few days after.
I emailed my Oncologist and asked to go down to 75 mgs of Ibrance the middle of my current cycle. I am really feeling the effects of the anemia it is causing. I also started 10 days of cyberknife type radiation to an area near my eye. I figure the radiation might add to the anemia problems. So, on day 16 I've gone from 100mgs to 75mgs. My insurance covered it. Hopefully if you need to you can do something similar. Good luck.
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JFV, thanks for telling me that. I don't do well on "ordinary" doses.
My last major progression was in 2014 during the 6 short months I was on Faslodex. But I'm menopausal now, and I have Ibrance.
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