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  • Moomala
    Moomala Member Posts: 397
    edited November 2019

    That must have been some infection Nkb. I am so sorry you were in so much pain. Interesting the differences in the procedures. Mine was a front tooth so just one canal. The infection was not too bad but the pain had started radiating around my face and jaw and my ANC was pretty good last week so he did it yesterday. Tooth pain is awful isn't it? I'm glad you are better. I feel sad that you had to deal with the pain an additional week ugh. I'm still dealing with a little soreness this morning but I'm on amoxicllin and advil and hopefully things will calm down in a few days. You must be so glad to get back on Afinitor. Were you experiencing some side effects when you went back on? Wonderful that you didn't need a new crown hurray!!!!! that's just more time and $$ you don't need to spend. My fingers are crossed on my crown.

  • nkb
    nkb Member Posts: 1,561
    edited December 2019

    I know- saved about $1000. and lots of hassle. The endodontist told me upper teeth is only one shot- it's the lower ones that need all those shots. Next year with new dental benefits I may get a mouth guard- tho they kind of gross me out. we will see. Yes- the pain scared me for the future! I know that dental pain is its own special hard to treat torture- but, I don't want to spend much of my life in pain. I kept listening to a song called "Release Me" by Inara George. and even though she is talking about a relationship- I was talking about the pain. it helped!

    I didn't feel that good, the first few days back on Afinitor - mostly in the morning. But, now I am fine. just hope that it is still working. I am going to decide it is until next year.

    Nice but, rainy and freezing cold thanksgiving. Snowed on the grapevine in LA. my garden is going to get a nice drenching with this storm which I am sure it will love.

    Here's to a lovely holiday season.

  • Moomala
    Moomala Member Posts: 397
    edited December 2019

    With you Nkb. My scans are not until end of January and I'm working on putting them RIGHT out of my mind. I can't do a thing about anything until then.

    My tooth is feeling way better now! I don't know if I should tell you this but the endo did several shots in the top but what was awful was the shot in the pallet. (my root canal was in one of my front top teeth) I hope I don't have to do that again any time soon. I am sure I could be heard on the second floor of the building. HaHa! But things are feeling so much better now and it's so great to be out of tooth pain!

    I am about halfway into week six A/A. Fatigue hit me this last few days to be honest. I'm still surprised that I am having hot flashes once or twice a day. I had zero on letrozole and menopause was a long long time ago. Still having a little lower GI stuff but nothing I'd complain to the doctor about. I keep thinking my hair isn't thinning anymore but then I get into the shower, do a wash and whoa it's still thinning for sure! I am very glad you are feeling better after re-starting. I have moved to three swishes a day now and will move to two swishes a day for weeks 7 and 8 since I am getting low-ish on the rinse. Spoke to the NP the other day about this cough and raspy-ness. She suggested that this might actually be a symptom of GERD and truth I have had a bit more reflux on this med than I normally have. So I will add a daily Prilosec to the mix for two weeks and see if this resolves things.

    Just listened to Release Me. I love love love it!!!!! I'm so glad you mentioned it!


  • nkb
    nkb Member Posts: 1,561
    edited December 2019

    moom- shots in the palate!! sounds really horrendous!

    Hopefully we will have uneventful days for the rest of the year.

  • sbaaronson
    sbaaronson Member Posts: 121
    edited December 2019

    Well, my CBC and CMP blood work came back almost perfect. Just a couple of things barely outside normal.

    CT Scan stable if not improved

    Bone scan showed about the same issue with right ischium, improvement in small spot on sternum.

    Tumor markers just came back up across the board.

    I feel really good.

    Any thoughts?!

    Thanks,

    Stacey

  • nkb
    nkb Member Posts: 1,561
    edited December 2019

    Stacy- congrats on normal labs and good CT - doesn’t it feel empowering to have enough red blood cells to carry oxygen everywhere?!! Which TMs did you do and how did they change?

  • sbaaronson
    sbaaronson Member Posts: 121
    edited December 2019

    Hi NKB,

    My CEA went from 7.6 to 11

    CA 15.3 145 to 179

    CA 27.29 152 to 176

    I am really gobsmacked! I don’t know what to think anymore. Oh, and this was the blood draw from 12/2, my 55th birthday.

    I pulled these from the portal so I will talk to my Oncology Nurse tomorrow.

    Any thoughts?

    Best,

    Stace


  • nkb
    nkb Member Posts: 1,561
    edited December 2019

    Stacy- it is Interesting that they do all 3. I only get 15-3 and mine does fluctuate so one reading up or down unless it is significant we just watch. 2 or 3 in a row or a big jump we do a scan. Some people’s TMs go up for several months on a new treatment as the cancer is dying or with a virus or big stress. Some people’s TMs are not predictive. Do you know any history about the predictiveness of your TMs?

    When I was on Ibrance there was a pattern. Down, down, up, etc then it switched to Up, up , down- 18 months later when it went up, up , up we did a scan and it showed progression.

    My TMs have gone down significantly after the first month on both Ibrance and afinitor. Last month they went up a lot, but, I had a serious tooth infection and had been off the afinitor for 2 weeks- so I declined the scan and will see what next month shows- hope it goes down. Now I have a cold. Sigh- I’m not stopping the afinitor if I can help it during this cold. Let me know what you onco nurse says.

  • Moomala
    Moomala Member Posts: 397
    edited December 2019

    I hope the oncology nurse can set your mind at ease Stacey. It's hard to see those tumor markers flucuate like that. But my oncologist has told me the bone scan and the CT scan are the absolute first thing they go by. The TM's can fluctuate way too easily. A women in my support group here is in a trial through Dana Farber and she said her oncologist there doesn't even do TMs. My onco doesn't do the 15-3. I get CEA and Ca27.29 My 27.29 bounces up a lot like that. In fact the first month on Afinitor it jumped from 209 to 244. That really scared me but when I looked back at my first month on Ibrance it jumped like that too. My CEA this month is 78. My numbers run high like that. I can't wait to get on a treatment and see those numbers drop and get a stable scan. Or even just a stable scan. I have been at this since May 3 without a stable scan. Ugh!!!

    At the end of my time on Ibrance my 27.29 had jumped about 30 something points but MO put that together with the unstable nuclear bone scan i'd gotten. Again my CT was stable (yay) but my TMs had jumped more then ten percent (boo) and the nuclear bone scan was showing uptake (boo). So those two things (boo) made the decision to stop Ibrance. I think that for you especially if you have both stable CT and nuclear bone scan but TMs jumped - I have a feeling there's just activity somewhere that could be dying cancer cells or an infection (please not another root canal - we've had enough of those on this board lately) or any other numbers of things.

    I still don't have a good read on my own TM's. I get them once a month. Here are my CA27.29' s on Ibrance....
    Month 1 - HUUuUUUGE jump from 189 to 264
    Month 2 - 209
    Month 4 - 189
    Month 5 - 209

    CEA's were having similar fluctuations. I don't have TM's for another two weeks so I'll get a picture then of whether my TM's go up at the beginning of treatment and then down again.

    Sorry this is long. I just think TM's are a less significant part of the picture than we think. Psychologically it's just hard to see them rising.

  • Moomala
    Moomala Member Posts: 397
    edited December 2019

    Nkb feel better fast! Tis the season!

    I have been having issues the last two weeks with increasing diarrhea and fatigue. I find that interesting. As if A/A had to build up for SE's to start. Or could be the Amoxicillin I added to the mix last week. Done with the Amoxicillin now thank goodness. I'm headed into Week 7 here. Yesterday fatigue hit me about three pm and o.m.g I barely made it through work. Ton of bricks sleepy tired. Oh wait - I have insomnia too. That's probably not helping the daytime fatigue. MO has me on the prilosec 14 day treatment to see if this cough and raspiness might be from gerd. I do have more heartburn on this drug.

    I have another person in my support group here who was just taken off A/A due to fatigue. She had a stable scan but the fatigue was significant and she went on to Piqray which is also not working for her. If I get a stable scan and still have this fatigue in January i'll ask for a dose reduction. Is anyone still on 10mg Afinitor?

  • nkb
    nkb Member Posts: 1,561
    edited December 2019

    I’m still on 10 mg. Fatigue got way better after first few months. The UCSF doc says she is quick to reduce the dose if needed.

    Not to scare you all, but, my TMs are in the 1000s. My MO and even the MO at UCSF have never seen such high TMs. I have to go by % change since I know no one who is high like me. On the other hand there are people with tons of active cancer and normal TMs. It’s just a tool that might be helpful for an individual or not. If it’s helpful do them and watch them.

    Rescheduled play last night. Skipped morning yoga today and slept in. Reading by the fireplace and a gently walk in the rain are my total agenda today. I haven’t had a cold in years- they suck.

  • nkb
    nkb Member Posts: 1,561
    edited December 2019

    also moomala- I think the antibiotics and the infection are messing with you also.

  • Moomala
    Moomala Member Posts: 397
    edited December 2019

    Likely Nkb. That's why I'm a bit glad I'm not having TMs done for another two weeks. With all this diarrhea I've been on mostly brat diet which is not the healthiest. But I'm on probiotic too and will just wait out this fatigue. A little exercise does help. I'm still not even at the two month mark on this combo. My oncology NP told me last time I was there nearly all of their patients stay on 10mg. Well if it makes you feel any better we have a woman in our support group with TMs over 9000. They're lower now that she's on IV chemo but she is still not anywhere near 1000. She would love to be. My MO says every singe body is different and every cancer is unique to that body. You just never know.

    Really glad you are taking care of yourself today. What are you reading? I'm finishing Where The Crawdads Sing. It's gray and gloomy and snowy here. Sadly I have to go out to this acupuncture appointment and then to work. Good times.


  • sbaaronson
    sbaaronson Member Posts: 121
    edited December 2019

    Moomala,

    I am on 10mg of Afinitor. The fatigue does get better. I do get tired in the afternoon but it's not at all like it was the first few months. I think it will pass. I wonder if the antibiotics aren't part of the problem, I had to be on 10 days of Augmentin for an ear infection and it brought me to my knees.

    Regarding your hair, I take 5000mg of Biotin in the morning and 5000mg of Biotin at bedtime. My hair is holding steady. Seems to grow more slowly but I don't feel it thinning.

    Moomala and NKB-

    This TM issue really took me by surprise. It's so hard to deal with this on a monthly basis. It really puts me in a funk when the numbers go up. I haven't spoken to or had an email from my NP yet, but I have managed to get myself to the let it ride for another month place. I just had a CT a month ago, I am not going to ask to be scanned again. I see my MO right after the first of the year. It can wait.

    Looking forward to getting away for the weekend!

    Thank you both for taking the time to weigh in. It is greatly appreciated.

    Stacey


  • sbaaronson
    sbaaronson Member Posts: 121
    edited December 2019

    Moomala and NKB-

    My NP just emailed that my MO doesn't think we need to do anything now. No more doctor's appointments this calendar year. I guess I'll pick this up in early January!

    Stacey

  • nkb
    nkb Member Posts: 1,561
    edited December 2019

    Stacey- sounds like a good plan. When my TMs go down I feel so happy! When they rise even a little- I worry. I would like not to do them monthly but, since my MO spreads out the scans - she wants the TMs monthly. My highest TM was 9800! The lowest it has been to my knowledge was about 4000.
    Moom- I just finished The Dutch House by Ann Patchett- really enjoyed it. I listened to the Japanese Lover by Isabel Allende driving to and from LA- also enjoyed it. I am really enjoying sci-fi lately. I loved Good-night Midnight by Lily Brooks-Dalton. Also read books about cancer - seem to be about young people with cancer- I learn some coping from them I think. The unwinding of the miracle, The bright spot, Do you think you should talk to someone, Everything happens for a reason and other lies I have loved, Illness as a metaphor, The Violet hour;great writers at the end, The etiquette of illness, what to say when you can’t find the words, End of life Bookclub, Change your mind ( michael pollen)

    A really fun book is Circe by Madeleine Miller.

    I loved where the crawdads sing also.

    I am retired so can read and also listen to audible while walking, sewing, raking sycamore leaves. You can borrow audible books from the library using the app LIBBY - just download it from App Store and put your library card number in.

    Cheers! HUGS! Happy Holidays.

    Lynn 1950s? Where are you?

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited December 2019

    Nkb, I am here. I took a little break from the boards. I am trying to figure out what to get people for Christmas, hosted Thanksgiving, made quilts for two of my granddaughters, and, in a moment of absolute insanity, got a puppy.

    I have been on A/A for three weeks, and so far have had no SEs. I know I have been lucky, and things will probably change. For now I will enjoy feeling good. Most of my blood counts were good when I saw MO this week. Even my hemoglobin has improved, and I am less anemic that I was while on Taxol. My TM results are not posted yet. My liver enzymes (ALT and AST) are elevated, and my MO is concerned. He said it can be from the medication, but it could indicate progression. We will see what happens. Did any of you have elevated liver numbers when you started A/A? Oh, I have developefa UTI that is resistant to some antibiotics. Today I switched to a more effective one. So much fun!

    Nkb, Your TMs were once 9800? I was shocked when mine reached the upper 3000s. My MO keeps me grounded by saying that it is not the number that matters as much as the trend. I keep telling myself that. If they go up or down three months in a row, it’s a trend regardless of the numbers.

    I still have to catch up on the posts here, but I will be a more frequent contributor from now on.

    Hugs and prayers from, Lynne


  • Moomala
    Moomala Member Posts: 397
    edited December 2019

    Glad to see you again Lynne! Yes my liver enzymes have been elevated while on A/A. Mine are typically a bit high and have been for many many years but they went up pretty much immediately on A/A.

    Uhhhh you HAVE been busy!!!

  • nkb
    nkb Member Posts: 1,561
    edited December 2019

    Lynne-I have never had a UTI or elevated liver function tests.
    my highest TMs were 9838 after I stopped Ibrance and was getting second opinion etc- I had been off treatment almost 2 months by then. I have heard that TMs jump after you stop ibrance. When I was first diagnosed with MBC was TMs we’re about 7600- the lowest they got on treatment was about 4000 I think.

    On AA I have much better lab profile with less anemia- my ANC is still low, but, not like with Ibrance. My hair is luscious now, which I enjoy. It fell out constantly on Ibrance and faslodex. Was super thin and limp.

    I don’t know how much longer this treatment will work- I hope for quite a while.

    Lynne- I make quilts also- I would love to see pictures of what you have made.

  • nkb
    nkb Member Posts: 1,561
    edited December 2019

    I have been listening to a breast cancer podcast ( meant for oncologists, but, very understandable) that said PFS for afinitor after failure in CDK4/6 was 11-12 months! This is very good news. Someone posted awhile back that they heard it was <4 months and Solar 1 study said overall PFS was 7 months. So I am optimistic to get another 3-4 months. ( or more)

    Cheers

  • sbaaronson
    sbaaronson Member Posts: 121
    edited December 2019

    NKB

    I read that stat recently, I am with you, I would sure like to get a year or more on this protocol! I would like all of us to get the most we can

    Here’s hoping!

    Stacey

  • Moomala
    Moomala Member Posts: 397
    edited December 2019

    I'm with you two! Although I'm experiencing a few annoying side effects like fatigue and diarrhea right now, it's really not that bad and I can handle this combo. So a year on it would be great. MO says she's got several patients who are on it for several years and one patient who had to come off the Afinitor due to pneumonitis and is on the exemestane only with no progression. You just never know.

  • masonsmawmaw
    masonsmawmaw Member Posts: 119
    edited December 2019

    Hey Yall!

    RE: TM's and liver enzymes; I had a period of about 2 months when my liver numbers went wacky on me. Everything was up and I had severe abdominal bloating. I thought I surely had progression. Needless to say, no progression and numbers quickly returned to normal. MO thought it was probably related to the Affinitor somehow. I haven't had TM's tested in years as my MO doesn't put much stock in the numbers, but I did request a 27-29 in September and it was 150. Just had it tested again and it is 119. Good news on that front!

    I'm quite down in the dumps today as a golf ball sized mass was found in my DH lung yesterday. He has further scans and a biopsy next week, but the MO feels quite sure that it is cancer. I FREAKIN HATE THIS NASTY DISEASE!!!

  • masonsmawmaw
    masonsmawmaw Member Posts: 119
    edited December 2019

    By the way, I am now 13+ months counting on Affinitor!

  • nkb
    nkb Member Posts: 1,561
    edited December 2019

    masonsmawmaw- oh no!! I hope there is a Christmas miracle and the mass is not cancer.

    Yay!You are having a good run on Afinitor

  • Moomala
    Moomala Member Posts: 397
    edited December 2019

    MM nooooo!!!! Please let DH be ok!!!! I will be thinking of you both - please keep us posted!

    My labs came back this morning. Liver enzymes dropped but still elevated. My potassium is low. My platelets are low. WBC, RBc and ANC are all in normal range. The pharmacist told me to eat potassium rich foods so I will do that. Platelets were 101 - not low enough to stop Afinitor. Apparently the Afinitor and the Amoxicillin and Advil really do not play well together. So I'm still feeling super run-down/tired/achy/diarhhea/ but at least I've got some good foods going into me like coconut water, oranges, potatoes, low sodium V8 juice, spinach and tonight for dinner is white pizza with broccoli. I admit I have not been eating very well becuase of this diarhhea so now I've just got to get ahead of the low potassium and perk myself up. I've never tried coconut water before. I mixed it into a larger water bottle and it was pretty good and most importantly perked me up pretty well. No TMs for another two weeks. Can't wait to be cycled through this first couple months. It's doable but lying on the couch sounds so good right now. I'm not taking immodium for the D at this point. It's just not that bad but my NP told me yesterday that if I go more than 4 times a day I should take the immodium. I've already added Prilosec in the morning for heartburn and now immodium too? This is one of my biggest peeves about all these treatments. Something causes one side effect so you've gotta take something else to mitigate - really frustrating! not an awesome day.

  • sbaaronson
    sbaaronson Member Posts: 121
    edited December 2019

    Masonsmawmaw-

    I so hope your DH is ok. I am with you on the hatred of this disease, although I use the other F-word as an adjective!

    Take care!

    Stacey

  • sbaaronson
    sbaaronson Member Posts: 121
    edited December 2019

    Masonsmawmaw-

    13 months is terrific! Hoping for at least 13 more!

  • sbaaronson
    sbaaronson Member Posts: 121
    edited December 2019

    Moomala,

    Coconut water is great! Warm bone broth and a good baked sweet potato are also good ones! The liquids should help keep you hydrated with the diarrhea. I don't know where in the states you are but in Los Angeles there is a brand of Coconut Yogurt that is high in probiotics and calories. I find it very soothing on the stomach. It's called Cocoyo and is made by GT's, the Kombucha company. I buy the plain. Also the classic BRAT diet might help slow things down.

    I feel confident the diarrhea will pass and your blood counts will get better. Hang in there!

    Have a lovely weekend-

    Stacey

  • Moomala
    Moomala Member Posts: 397
    edited December 2019

    I am sure you’re right Stacey thank you!!! I think this will take a few days. My toes and calves are still a bit crampy. I’ve always had that problem at night though so not too serious. But the fatigue is better after the coconut water. That stuffs the bomb! Plus the further I get away from the amoxicillin the better I guess. I have never seen Cocoyo but I’m going to keep an eye out for it Thanks for the recommend!

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