Afinitor/Aromasin
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thanks aman, i have changed docs and facilities, actually based on advise of my old onco.
This one is 12 vrs 36 miles from my home and it is much easier to get to
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Amarantha, I'm pretty sure my original IV chemo didn't do much for me, since my recurrence happened after only three years, but the Xeloda (in combo with the Afinitor) is indeed working for me right now. And there are other chemos in different families that could work too.
Lalady, I will PM you.
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I am disappointed this treatment is not working for a few of you. I hope your next one blasts away some of those mets. For those considering Xeloda, it is a very effective drug, especially for liver mets.
LA, I am not sure what to make of my infection. Many around me have been sick and it is typical when I have a cold/flu, it usually moves down to my lungs as a secondary infection, as it did here. However, I am more suspicious given that the lungs are impacted by this drug. Maybe it makes us more exposed to catching a bug. The laryngitis I had is the first time in my life I had that. I went to bed one night with a normal voice and slight body aches and woke up the next morning with literally no voice. No cough or sore throat to cause it, the infection originated in my voice box. It was a very difficult, weird week being unable to talk. I suspect that I probably have mouth sores up and down my throat which left my vocal chords compromised and more susceptible to an infection.0 -
Hello,
New to your group, yeah for me ! I have been reading a few posts but did not go back to far. I am starting Afinitor today. I will continue with Flasodex and Xgeva. IBrance failed me after 14 months. Started the Dexamethazone mouth wash to prepare for my first dose of Afinitor. Set alarms on my cell phone to remind me to swish! Decided I would play a great song every time I had to swish. Thought ...hey why not dance a bit and make this fun. Wow, did not realize how I have not danced in a bit and counts are pretty low. Well I got winded!! Totally SOB. Now it is my fitness routine.
Any tips to help me out, are greatly appreciated. I look forward to getting to know and support you all
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Tigwin - I chug my Afinitor down with cold coffee, found that easier than yogurt or whipped cream, and besides after taking all my other morning meds and answering the odd email or two, that coffee is quite cool. lol Ladies - went to UCLA onc and had the Guardant360 test done so we can get a handle on why my TMs increased after one round of Afinitor and learn about my bio-sequencing. Hoping for results after my cruise, when I will get a new scan too. Discussed merits of moving on to low dose Xeloda as needed. JFL - rooting for your lung - did you ever try faslodex? Proudtospin - how are you doing? SP - you rock, ditto Z. I have two bruised arms from so many blood draws, but it's Taco Tuesday at the bay club so will have a little protein tonight.
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lalady, back from last rad treatment and meet with new onco at sloan. She feels that i failed so bad on the affinitor, it may mean i am no longer hr positive. Testing now for that and getting approval for funky,new med which will be an oral chemo and involve many pills each day. And got 2 weeks off till all proved. Then again got nasty case of thrush, oh for joy ,!,,,,
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I hope I'm not heading for thrush. After 8 days on the Afinitor I'm getting a slightly sore throat and Onc saw a few red spots on back of my throat. Plus my tongue feels like I've been sucking too many sweet tarts. so far blood levels are good though. Waiting on TM numbers. Have a great cruise lalady!
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Well I'm off Afinitor after 6 weeks and I am really glad. I never got any mouth sores and that was the good part. I have had a dry cough off and on for 2 years and have been told everything from nasal drip to acid reflux symptoms. The cough got more persistent...basically every day, and the dry cough was deeper and louder. My oncologist gave me a cough syrup with codeine and a week course of prednisone, that didn't do a thing. This cough was taking over my days because I would lay down most of the day to avoid coughing. I told my oncologist last week that I have coughed so much my ribs and abdomen were sore. She sent me for a chest X-ray that showed clear! I told her "No something is really wrong." So she moved my scans up immediately. I had a pet/ct and a ct with IV contrast. There is a possibility that I could be developing interstitial pneumonia or pneumonitis. My scans showed all tumors in liver bigger with higher SUV's. I am now on weekly Carboplatinum and will be watched closely.
My last week blood work showed liver enzymes were high after the 6 weeks of Afinitor and TM's went up 50 points. I was hoping it was tumor flare, but that was not the case. I for one am glad that I am off Afinitor, because I had hep b back in 2013 and was hospitalized for 9 days and almost died of liver failure. Afinitor can cause a relapse of hep b, but I was taking precautions by taking a anti-viral and testing for hep b antigens monthly. But seeing my liver enzymes off when they have been perfect since I have had stage 4, it really scared me.
I hope everyone here does great on Afinitor and it's just the magic bullet you needed.
Best wishes to all!
Robin
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Robin - so sorry to hear of your progression - and hope your Vegas trip was fun! You are a strong lady and we hope Carbo kicks your mets to the curb. I'm leaving for my cruise to Sweden on Saturday, returning for scans and expect to be off this "A-phoney-tor" shortly. This seems to be an overhyped med that caused me major pain and doubled my TMs after one cycle.
Sorry to be the bearer of bad tidings, but very few of us are getting long runs with this combo, and many are getting lung issues which are not good. I will send pics of my trip, please keep us posted. Proudtospin, Artist and Pam - how are you doing? Best wishes to all.0 -
Robin, I am sorry you are off this drug. I hope Carbo does the trick for you!!! I can understand why you are super cautious about your liver enzymes. Should be a relief to be off Afinitor for that reason. How was Vegas??!! Always a fun place.
Lalady, count down to Saturday! I had an amazing time on my Europe trip and want to go back. Actually, I didn't want to leave.
I am still sick. Am at the end of this illness but it has been 16 days. I think I have a combo of a very, very bad, weird flu virus + a very slow healing process due to Afinitor. My MO and DH (also a doctor) do not think that Afinitor is causing the illness but do believe it is slowing down the recovery. On a positive note, my tumor markers did go down at the time of my first bloodwork since starting. My liver enzymes were up but I was already sick then and my liver enzymes always shoot up when I am sick.
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lady, weird as if i undrstood my new onco explanatì as to why affinitor failed so quickly for me, it is because i am no longer estrogen positive, did nt know stuff could change? Dang confused but preparing my list of questions for meet n one week
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lalady, I'm doing OK. No mouth sores so far after 12 days on this although my MO said my throat looked red. My liver enzymes and blood counts are good. I do seem to have a slight dry cough, mostly at night so am keeping as hydrated as possible and really keeping on eye on how my lungs feel. I'm feeling pretty leary of this med too though as I haven't seen much success so far...Crossing my fingers as I seem to be blowing through stuff pretty fast too.
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Proudtospin, my onc says the same thing, that the cancer seems no longer functionally ER/PR positive. Cancer is evil and it morphs. I wonder what your onc has planned. Oral chemo with many pills sounds like Xeloda. (I've been on it for 12 days.)
Geez, sometimes it seems like we should cross the words "Afnitor/Aromasin" off this thread title and relplace them with "Xeloda". But JFL had lower TMs last check, so that's excellent. Let's see some success for Artist, Tigwin, and the others still on or just starting Afinitor. It has to work for some people!
Rpoole, good luck on carbo. Lalady, "A-phoney-tor" is hilarious. Good one. JFL, sending lots of get-well-soon wishes.
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shetland, thank you so much for responding to my comment about my cancer changing, i kept wondering if i heard correctly. Yeap. Xeloda is to be my poison, not clear how loñg it will take medicare part d folks to approve cost. Was talking to my fidelity guy last week and he told me to call him when i find out how much it will cost. Figure he wants to adjust my retirement account.
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Hello,
Well I'm still here ! It is day 11 on Afinitor and, cross my fingers no side effects so far. I have been swishing the mouthwash three times a day. Four times was just too much. I'm still working full time.
LALady...I am a Cedar Sinai girl ! Treated up there even though I live in SD. I train up once a month for treatment. My Onc is brilliant ! Love her. I have been taking the Afinitor with tons of water, so far so good. My TM have jumped around a bit. I finally decided since they are not the only deciding factor, I don't want to know them until I need to. I told my Onc, you be the doctor and tell me what I need to know, I am going to get up every day and try and do my best to live a joyful life. I was getting consumed with them. Have a great trip
Proudtospin...YOU did not fail Afinitor...Afinitor failed you!!! I am sort of big on how we speak to our body and mind. Not every drug works for every body. We are fighters and strong women. :-) I know I'm new here, I hope it is okay to tell you, you are amazing and it was the drugs fault, wishing you best of luck on your new treatment. Do you use Biotine for Thrush? Mouthwash and toothpaste helped me in the past not get it.
Rpool...I hope the new treatment is the perfect treatment for you.
Artisheart...I believe we may have started very close to each other. Best of luck!
Shetland Pony...I kinda freaked out with my Onc when I had to leave IBrance and start Afinitor. I'm 57 and on my third round with cancer. My first diagnosis was when I was 28 years old, so my relationship with her is very close. She told me not ever medication is for everybody. She is very honest with me and we have grown up together so I trust her very much. I believe this is true. I actually feel better on the Afinitor than I did the Flasodex but the truth is time will tell. If this works, great if not then on to the next one.
You ladies are inspiring and wonderful 😊 Speak with you soon.
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tig, thanks for hitting me on the head about how i refer to afinitor
Yes i am using good old biotin toothpaste and will switch to the mouthwash when my script mouthwash is ended
Eager to meet with my new mo for new plan next week
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Tig, I'm a Cedars girl too! (Well, by way of Tower Oncology)
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proudsipin... yeah for you! It's not you it's the medicine. We are awesome!
Girlwithacurl....We have the same group. Is your Onc the sweetest most beautiful Philomena? Any Onc out of that practice is phenomenal ! I have known her and Hamberg since 1989. I helped them open their first practice when it was in the towers. Love my treatment day. Staff is awesome. Maybe we can say hello when we are there on the same day
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Yes Tigwin! I see Philomena too! So grateful for her and the whole team. Even the sweet valet guys! I'll be there twice next week for shots.PM me when you come up--it seems I'm there all the time!
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tig, yes we did start around the same time. So far I only had a little problem with sore mouth. Mostly my tongue felt sensitive. I find 4 times a bit taxing too but have been doing 3 most days. The other thing is I have been getting these weird pressure headaches about twice a week. Similar to a sinus infection, like tingling around my face and just a bad squeezing feeling. The other morning I woke up and the room was spinning like crazy. I felt disoriented and nauseous for a minute. It was very scary. Wasn't sure if I slept wrong on my neck or didn't hydrate enough. (I was having some constipation issues and maybe low electrolytes? ) I have since resolved that. It subsided fairly quickly. so onward with Afinitor but hope the headaches stop.....
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Girlwithacurl...Sent you PM !! Love our Onc !!
Artistatheart..I was getting little headaches at the end of the day. I am a huge water drinker but did realize I was not drinking as much as normal so I increased and now no headaches! I have had Vertigo many times over the years. That is that bad dizzy spin out of control sensation. I too woke up a few mornings thinking Vertigo was coming on. After increasing the water I have not had the feeling and I did not get Vertigo. We have been in a bit of a heat wave so increasing water does do miracles. I have a goal to start walking 30 minutes a day. My nurse told me this will help energy. Will help your tummy too. We have to move. Good for mind and body. We are in this together
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Ladies, I have been on the Afinitor / Aromasin combo for 7 months and would like to share some experience with you.
Efficacy: 4 weeks after starting Ainitor at 10, my tumor marker CA 27.29 dropped from 185 to 94, CEA from 12 to 6. In the 4th month, CA 27.29 returned to normal (30) and continued dropping. My last CA 27.29 2 weeks ago was 17, CEA was 1.5. Meanwhile, my CT scans and bone scans both showed improvements, the lesions shrunk or disappeared.
Doses adjustment: first 3 months: 10; second 3 months: 7.5 (due to CT showed sign of pneumonitis); now 5 (due to pneumonitis developed on CT imaging, although I have just a little symptoms).
Side effects: Afinitor is famous for its side effects. For me, it's true. I have experience many of the listed side effects. First of all, the mouth sore. However, I had severe mouth sore case just in the first month, dealt with magic mouth rinse. The mouth sore would come back now and then later, but never severe and after a couple of magic mouth rinse swishes, it would be gone. I do not use magic rinse daily to prevent (it contains antibiotics and steroid, I try to reduce the exposure). I lost 30 pounds on Afinitor. Now I have 112 pounds left. I am worried about further loss. Foods all tasted terrible, particularly sweets. I do feel hungry and do eat enough, although not enjoying food any more. Sign. My hair thinned a lot. The good news is that the hair thinning business now has stopped. My hair recently has grown thicker. My finger nails and toe nails all became yellow and brown and chipped due to the tips of the nails are dead. This business is still going on. I only occasionally had light fatigue. What affected me the most is frequent colds. Afinitor made me very easy to be sick, particularly in the winter. Oh, I forgot, the most severe side effect happened to me should be pneumonitis. I still do not really have the symptoms. The only thing I can clearly feel now is that I have to cough if I try to do really deep breathing. I would occasionally have a little light cough, though. My primary told me I could afford to loose a small portion of the lung function for the sake of important cancer treatment since I am not a marathon trainee, and that the pneumonitis caused by drugs are reversible. I have scheduled to see a lung specialist, but my Dana Faber PN told me that's not necessary. Whoops. There must be more smaller side effects, I can't recall just now.
Advice? Afinitor can be very effective! Also, the dose might well should be begin with 10, adjust or lower it later. For the danger is, if you begin with low dose expecting your body to get used to, the cancer cells do the same. Oh, there is NO need to wrap the pill when swallow. I never do it. What causes the mouth sores is Afinitor killed some cells that usually prevent the fungal stuff from invading the mouth or the skin (so some would have rushes). It is not because Afinitor touched the surface inside the mouth. Otherwise, the pills should be already coated properly by the manufacturer.
Good luck everyone concerned here!
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Hi everyone, Just popped over to see how everyone is doing?
Update on this debilitating cough that happen at the 6 week mark on Afinitor. This cough started on my second day on Vegas May 27th and today June 28th it is still bad with no improvement at all!! So we are talking 32 days with no relief. My MO put me on 2 antibiotics when I returned from Vegas on June 6th. She gave me a Z pak and Amox-Clav and also 30mg of prednisone. NONE of that worked at all. I had a chest xray that reported all was clear! WTF???? Not a good tool to use for lung issues!!! My PET Scan on June 7th reported that it could be a partial lung collapse, interstitial pneumonitis, or infiltration of the lung with metastasis. They just don't know, so my MO is setting me up with a pulmonary oncologist.
JFL...Im sorry to hear you are dealing with the crud. Just keep an close watch on it because of the Afinitor. I am happy to hear your TM's went down. Vegas was awesome, but I didn't get to do as much as I wanted bc of this cough and feeling in my chest. It made me so miserable. But I'm going back the end of August to make up for. That's my excuse for a return trip to Vegas...and I'm sticking to it!!! lol
Shetland, I had the Biceps liquid biopsy at the same time as liver biopsy. My results on the circulation tumor test showed triple negative cells and picked up on the AR positive...which I already knew. But the liver biopsy showed liver lesion 80% ER positive. UGH. Just made it more complicated for me and I was depressed for a week after that news. I'm guessing I have heterogeneous cells
I will be interested in your results.Artist...Can you get your MO to give you a script for possible thrush? I have a burning pain in my chest with this dry cough, so my MO suggested maybe you have thrush in your esophagus.....Yes no problems with my tongue or back of my throat. It was some kind of swish and swallow and I never even used it. I knew I did not have thrush. I also had a few headaches on this drug.
girlwithagirl, I think you MO is amazing for thinking outside the box!!! My MO works on standard of care, but she also has me to deal with. I do a lot of research and get a lot of information from these boards. I have not responded to any treatment since last November. So she put me on Carbo alone 2 weeks ago. Here is where all you lovey people on the boards come in for me and proved that being your own advocate is a must. I noticed on the boards that most of the women (or men) were on a combination of Carbo and Gemzar. So yesterday at my MO appointment and chemo treatment, I told my MO that I see a lot of people on the combo of chemo instead of Carbo alone. And since my disease is progressed and I am in a serious situation, could you add Gemzar? Just like that she said sure, I will order it now and you can receive it today with your Carbo. OK great for me for advocation for myself but.........why did she not suggest it in the beginning? UGH!! My cancer is out of control in my liver and I think 2 drugs are always better than 1. I contemplate about leaving her, but the one big plus with her is she gives me no hassle at all when I tell her I want to talk to an interventional radiologist or any other kind of Dr. I want or need. She just asks me if I have anyone particular Dr. (and I always pick my own) and her assistant sets the whole thing up. And I'm doing the happy dance for you and glad your protocol is working!!! YAY!
LaLady, I am right there with you on your feelings about Afinitor. I had planned to never even try it from what I've read about it, but it was my last pill option before chemo. And I think I would have always wondered if it would have worked for me. So now I know it treated me bad bad bad!!!! I was only on this demon drug for 6 weeks and my TM"S rose like crazy. My TM's have been very accurate for me and usually jump up 5 or 6 points when I have progression. My first TM result on Afinitor and it jumped 50points, my second marker result was only 7 days later and it rose 55 points. My last TM result was 198 and before I started Afinitor is was 48. I also read an article that Afinitor targets P13K, AKT ,MTOR,PTEN, and TP53. There is a study in progress with tumors of the GI tract and pancreas and to qualify for the Afintor in this trial.....You had to have these (drivers) is what they referred to them as. I have none of these gene alterations!!! Maybe for those who have success with Afinitor...they have one of these mutations. I have also read on the old Afinitor threads where women were complaining how they think Afinitor only made there cancer worse. It definitely made my cancer worse. This drug is dangerous and should be researched more!!!!!!!!!! I do want to say one thing for those of you who have had success with Afinitor that I am happy for you. I heard when it works.....it works great and when it doesn't.....it's a bad drug!!! I hope you are having a blast on your cruise and would love to see your pics of Sweden!!!
Tigwin, Welcome and good luck on Afinitor. I never even had the first mouth sore and really felt so good on this drug until the very debilitating dry cough kicked in at the 6 week mark. My scan showed progression at 6 weeks, TM's tripled, and I dealing with lung issues. I'm glad I am off of this drug!!! Do you know if you have the P13k mutation?
Proudtospin, I hope you have a great meeting with your new MO!!!
Amaranth, I am sorry you had to deal with the lung issues and I hope you are recovering well.
As alway you ladies are the best!
Much love from Alabama!
Robin
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Robin, I am glad you enjoyed Vegas . . . in spite of the Afinitor cough/lung issues. I can't believe you are still having Afinitor side effects! The "gift" that keeps on giving. Must be frustrating the PET scan couldn't determine the cause of the lung problems. I hope the specialist can shed some light on what is causing it, and that your new combo works wonders on those liver mets.
Interesting what you noted about patients having any of the PI3K/AKT/MTOR, PTEN or TP53 mutations responding better to Afinitor. I have the PI3K mutation and an MYC mutation that supposedly inactivates the protection provided by a healthy P53 and have heard the same info you noted but don't know what to believe with all the conflicting info out there. It is impossible to make sense of it all! For example:
- Contradicting the info above, I have heard in other studies that the PI3K/AKT/MTOR mutations didn't necessarily predict Afinitor response. (😟 not good news for me)
- Somewhat contradicting that, I heard that patients who have both a PI3K mutation and an FGFR/FGA mutation fared better on Afinitor (I have both PI3K and FGFR1). (😃 good news for me)
- Additionally, supposedly the PI3K and FGFR/FGA mutation combo is a negative prognostic indicator, but, after Afinitor use, the risk of mortality improves so that it is back in line with ER+ breast cancer without these mutations. (😃 good news for me)
- To contradict that, I have also heard that breast cancer becomes more aggressive and untreatable after Afinitor use. (😞😞😞 terrible news for all of us)
- Additionally, I have heard that having one or zero of the following mutations predicted good response to Afinitor, while having two or three predicted negative response: PI3K, CCND1 and FGFR1 (I have all three). (😞 terrible news for me)
I am as confused as ever!!!
All the hypothecation aside, I had blood work yesterday and my tumor markers were good and my liver enzymes and alkaline phosphotase improved significantly (they were high last time but I had hoped it was due to being sick, which it must have been; these 3 stats shoot up every time I am sick).
With respect to the flu-type thing I have been having the last 4 weeks, I am feeling much better, slowly but surely, with small improvements every day. Now, all I have is minor chest and sinus coungestion and a raspy voice so nearly 100%. Although my MO thought Afinitor is responsible, at least in part, for the snail's pace recovery, he didn't think my symptoms were due to Afinitor-indiced, interstitial pneumonia. He said that the key sign is shortness of breathe which I never had. He offered to order a CT but said it is not really worthwhile because nearly all patients on Afinitor shows some signs of pneumonitis on scans but that the recommendation is to treat only those with side effects (shortness of breathe).
I hope everyone is hanging in there on Afinitor. Please keep sharing your experiences. This drug is certainly a wild card with not enough info out there . . . .
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Wow girls, I have just read all the new posts, and am kind of concerned for all of us. I am amazed how you stay so positive amid progressions. I'm feeling much better now after the pneumonia episode, but having issues with ongoing pain. I have brought it up several times with the doctor, pain in bones and tendons kind of all over, particularly back, feet, achilles tendons and wrists, particularly right wrist and elbow. I've been ramping up the painkillers to get through the night. I guess I'm hoping it's not gone into my bones.
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JFL, This stuff is all so confusing. I asked my MO on Tuesday about the connection with Afinitor and the mutations I mentioned. She said she has seen Afinitor work on a patient that had none of the mutations. Here is the scary part.....The patient was lucky to get 4 years off of Afinitor, but after Afinitor failed.....nothing every worked again and she passed. Who knows if the Afintor was the problem of nothing else ever working but that scares me to death. My MO said there really needs to be more studies on this drug.
My cough has become much worse over the last 2 days and I have a raspy voice and actually feel like I am going to lose it all together. I am happy to hear your liver enzymes are back in check. Afinitor has been the only drug to raise my liver enzymes and now that I'm off of that drug, my Tuesday labs showed liver enzymes are back to normal.
I am so frustrated with my MO. She forgot to make me an appointment with a pulmonary Dr. and she was supposed to do that 2 weeks ago. So on Tuesday, I gently reminded her and she said her secretary would make the appointment and call me. I have been checking in daily and still have no appointment. I am going to find my own pulmonary oncologist and go see my GP and get her to refer me. I am so miserable and can barely take this anymore. I sent my MO a text telling her my cough was much worse and she said she would call in doxycycline and prednisone. She has had me on 3 other antibiotics over the last few weeks...Levequin, Amox Clav, and Z Pak and a 2 week course of prednisone. And there has been no improvement!!! What is wrong with these people?? I am beyond frustrated and mad!! She also told me if my breathing gets worse...go to the ER this weekend. Well first of all, I don't have a breathing problem and never have. It's this debilitating cough!!!! I just want to scream!!!!!!
I do not think my cough is related to the Afinitor. I have a new hilar node that showed on my scan. The hilar node is connected to the bronchial tubes, and I believe this is the problem. Of course, I could be wrong but I just don't think the Afinitor caused this. I have had a cough on and off for the last 2 years and was blown off and told...acid reflux or nasal drip. The only thing is the cough got worse while on the Afinitor. So who knows if it's a coincidence or the stupid Afinitor.
I am glad that you are getting better slowly but surely!!! Thanks for letting me rant!!
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Robin, You deserve to rant and should. Good glory you have been through the wringer and having an Mo who doesn't seem very engaged is soooooo scary, disconcerting, frustrating and inexcusable. I have been having abdominal issues for well over 6 weeks. Horrible bloating and constipation. Some days it has been beyond uncomfortable. I have attempted calling her office 3 times now and they just keep giving me to a nurse practictioner who suggests more OTC remedies. Which has produced some bowel movement but also severe dehydration no matter how much I guzzle and I still have this horrendous bloating. I look pregnant. Thanks for the heads up on the thrush. My mouth is getting better and throat is better too although I stopped taking it 4 days ago....
As far as making your own appt. with a pulmonary specialist, when I called mine about the bloating/constipation issue I was told by her NP that this was not really a BC related issue and to call my GP! When I said maybe I will just call a Gastroenterologist she said you need to have an appt. with GP first who will refer you to a Gastro guy. So great, let's create a week delay at best for a GP appt. which I will have to pay for an office visit just to retell my whoas. Then who knows how long to get into the Gastro office. In the meantime I can barely sit upright which I STRESSED to this NP. I am feeling the same about my MO lately and need to make some decisions. I just don't feel like they care.
As far as the Afinitor, my taste buds are just dead. Between that and the bloating my appetite is zero. I have probably lost 10 pounds so far. I force myself to eat little amounts of things just to get back some energy but I have ben laying around a lot as walking is very uncomfortable.
And the RASH, OMG! I have developed a very itchy rash all over my body (except my face thankfully), with these bug bite type sores. Even though I quit taking it for 4 days now the rash continues to spread.
Thanks Tig for the water reminder. I do keep a glass or bottle handy at all times but sometimes forget to chug a lug. Haven't had any headache or dizzy issues lately but also stopped the Afinitor due to the other problems. Asking her to reduce my dose tomorrow I guess but after everything I read here do I really want to continue? Unfortunately I have already blown through several Tx's as well so hate to quit something that might be working. However, I just get nervous when I hear it may work for awhile but then nothing ever works again after that .....or a few ladies way back I read about that swear Afinitor caused them to develop belly mets out of the blue....
Thanks Xavo for some positive feedback. I am very happy for you!
Cancerland is hell on earth. Comfort and hugs to you all.
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Artist, I am concerned about you and annoyed with that NP. She seems to be just a gatekeeper preventing you from accessing your onc. I can imagine that she is thinking, "Oh lots of patients get gastro problems from treatment, no big deal." But how much does she really know about ILC and how it can metastasize to the gastrointestinal tract or peritoneum, and the need to rule that out for you? How does she know, and over the phone for heaven's sake, that it is "not a BC-related issue"?* I am not saying I think you have those mets going on, Artist. I am saying that not being able to sit up properly because of this bloating is not normal, and a physician needs to see you and start figuring out what is causing it. And has any medical professional looked at the rash? Afinitor can compromise the immune system, so they need to stay on top of things with you. ("Bug bite-type sores" makes me think of shingles.)
So I guess I would spend tomorrow morning on the phone, saying politely but firmly that I need an appointment this week. I would call onc, gastro, and PCP. If necessary I would show up at the office and say that something is wrong and I need to be seen today, by a doctor. Don't ask them. Tell them.
* A little story about me. When I first had upper right quadrant abdominal pain, I was scared and called my onc's office. The nurse practitioner asked about the pains and my bc history (stage 1), then told me it did not sound like liver mets and to see my PCP. FIVE MONTHS later I finally got the liver mets diagnosed, and they were extensive enough to require immediate chemo. So pffft to NPs and their phone diagnoses.
Some of my posts seem to be getting a bit fierce these days...
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Shetland Pony, I like you fierce. It is disheartening, the lag between our consciousness that there is a seriously wrong thing happening, and our doctors' willingness to take it seriously, this is making me crazy. Why did it take five months to diagnose the liver mets ? did they just not show up on PET scans or blood tests ? How was it they finally diagnosed it ? I am so sorry to be asking you these questions, so sorry that you have these liver mets. Sigh. Did the immediate chemo have an end ? It looks like yes from your signature line.
Artistatheart, I know about the tastebuds being dead from Afinitor. I had that for a long time. At first it was so terribly disheartening. I think my tastebuds are back now, or maybe I have just gotten used to it. What do you use to keep the mouth complications at bay ? They give me salt water to gargle and pills to disolve in the salt water that are supposed to keep the mouth sores away. I suppose for the rash you have been told to take an antihistamine ? I had some rash, and crazy itching all over my body. I had to get up at night and slather my skin with every jar of cream I could find in the bathroom. That did calm things. It did go away.
Rpoole, I sure hope you get some answers soon.
So much frustration. It seems we are all feeling the same thing, about being "blown off" and bugged about being sent to overthecounter medications. We want to be taken seriously. Sigh. What is everyone doing for anxiety ? My doctors keep trying to push the Paroxetene (Paxil) on me. It did make me feel somewhat better, and then I forgot I had a problem so I stopped. Now I'm back to sitting up all night thinking about dying. Seems like a logical thing to think about. And also thinking about how to find a way to communicate better with my oncologist.
Okay I guess that painkiller is finally kicking in and sleep is on the way. Goodnight gals.
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Thank you, Amarantha. I guess fierce does have a place, as long as I can also be gentle when that is what is needed. I don't mind your asking questions at all, and sometimes telling our story helps someone else figure their situation out. So in 2014 I had an episode of URQ pain that lasted maybe two or three days, and I made that call to the onc's office, when the NP said it did not sound like liver mets. By the time I got to my PCP the pain was gone. She offered an ultrasound, but said I didn't have to do it since the pain was gone and my liver enzymes blood test was normal. I had another episode maybe two months later, but the pain was gone by the time I saw my surgical oncologist at my yearly follow-up check (after stage 1 lumpectomy). He said if the pain comes back, come see me, because you might need surgery for gallstones. The third time it happened, five months after the first episode, my new PCP ordered an ultrasound. I went to pick up the results, expecting to read that I had gallstones, and instead read that "multiple metastases to the liver must be considered". At that point I went to my current cancer center where a PET/CT confirmed the mets, though my liver enzymes were still in normal range. My onc started me on Taxol the following week. After three cycles of three weeks on, one week off, the PET/CT showed no evidence of active disease, and we did two more cycles for good measure. Looking back, I now understand that the long-time gastroesophageal reflux and recurrent tummy aches below my sternum were also symptoms of the liver mets. But none of my follow-up doctors -- surgical oncologist, medical oncologist, radiation oncologist, gynecologist, PCP -- asked me any questions about these things or pressed on my abdomen to check my liver. They seemed to believe that low risk meant no risk, just because I was stage 1, grade 1. (But I always felt I was in more danger than they did. Intuition.) And I had even mentioned the reflux to most of them. Of course, catching the liver mets sooner would not have made me any less stage iv, but I probably could have started with an aromatase inhibitor instead of Taxol, and kept my long hair. But it was great that Taxol worked so well.
I'll write more later about the other things. Sleep well.
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