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Comments

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited December 2022

    My thoughts are with you and your wife husband11. Let us know when you can. With regards to next steps, my MO liked to go back and forth between chemo and hormone based treatments. I think he had the same theory that it extended the time to estrogen resistance. You might want to also consider a different chemo and keep Xeloda in your back pocket.

    Nicole, I hear you. It’s tough being in this place… hugs!

  • moderators
    moderators Posts: 8,739
    edited December 2022

    Hi all,

    Just jumping in here to WeninWi's point on Elacestrant for husband11 (and also sadiesservant) -- we also just reported on the Elacestrant news from SABCS 2022 and released this Podcast episode from the conference. Take a listen or read the transcript -- it seems very promising for endocrine-resistant MBC that has stopped responding to other hormonal therapies or CDK4/6 inhibitors.

    We hope this is helpful and are thinking of you all!

    --The Mods

  • husband11
    husband11 Member Posts: 1,287
    edited December 2022

    The Onc says my wife should stay the course with exemestane and abemaciclib. Its just too bad that it causes my wife such intestinal discomfort. Hard to say whether part of that is the ascites and not the abemaciclib, but she definately feels worse now, than she did on palbociclib. Way more nausea. She has a prescription for an anti nausea drug, which she takes when it gets really bad.

  • husband11
    husband11 Member Posts: 1,287
    edited December 2022

    Is there another chemo, that is as mild as xeloda? Aside from the hand foot syndrome, my wife felt pretty good on xeloda. She also got to keep her hair.

  • newgardener
    newgardener Member Posts: 103
    edited December 2022

    Hi husband11, I'm sorry your wife has so much discomfort with abemaciclib. I had diarrhea on it, but it was during the height of the pandemic so we weren't really going anywhere so it was manageable and timely imodium helped.

    I'm not sure if there is something that is always considered an easier chemo as people have different reaction. My experience with Xeloda/cape was also relatively "good".

    CMF (cyclophosphamide, methotrexate and 5 fluorouracil) has the reputation of being milder, and doesn't cause hair loss, but it's old timey and I don't know its relative effectiveness. Over the past 2 years, my oncologist has had it on the list of choices at progression, but so far we've gone with abema, a trial and now eribulin. There is an oral CMF version, which reduces the big swings of post-IV chemo days. And yes, it's on the formularly in Canada.

    Your wife has had relatively few lines treatments, she may be able to get into a trial with a better side effect drug when the time comes?

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited December 2022

    Hi Husband11,

    So the scan results were good? I also had nausea with Abemaciclib but only at the high doses. Once we scaled it back I was fun and, oddly, I didn’t have a ton of trouble with diarrhea.

    In terms of other chemos, I found Vinorelbine (Navelbine), Halaven (Eribulin) and Gemzar (Gemcitibine) all very tolerable, feeling pretty good on each treatment. They are all IV chemos but Vinorelbine is a two minute infusion (would recommend getting a port as it can burn the skin if it gets on you - never had that problem but love my port). Gemzar was the most time consuming as there is an infusion every week for three weeks and a lot of prior bloodwork. I didn’t lose hair with any of them - perhaps some thinning with Eribulin. The lung issue with Gemzar is rare and likely due to the fact that I have a compromised lung and have had radiation to the region of the mediastinum.

    There are lots of options that are not as rough as one might imagine. My problem is not responding to chemo rather than not being able to tolerate the treatments.

    Had a call with a urologist today. I suspect stents are in my future as it turns out both kidneys are showing hydronephrosis. That’s new and a big change since the end of August. Don’t want to add kidney failure to the list but I’ll check kidney function first with blood tests if I can get there. More snow on the way…

  • weninwi
    weninwi Member Posts: 795
    edited December 2022

    husband11,

    I was on abemaciclib for about 27 months and posted on that thread regarding my many side effects, etc. Here's recap of my stomach pain problem and what worked.

    I did not have outright nausea, but I did have terrible intermittent stomach pain. I tried numerous interventions and after a lot of trial and error I figured out I had developed a FODMAP food intolerance. This was completely new for me, but once I started avoiding FODMAPS, especially high FODMAPS, my episodes of stomach pain much improved.

    Also, I just learned about Banatrol, a food based supplement available on Amazon. It claims are for diarrhea control, but I thought I also read that it can help control nausea, but I can't find that reference now.

    Wendy

  • susaninsf
    susaninsf Member Posts: 1,099
    edited December 2022

    SS,

    I totally get where you're at. But I wish you weren't sharing my terrible experience.

    I got my second dose of PY-159 + Keytruda and I feel terrible. Joint pain from neck to feet. Non-stop coughing unless I'm sitting or standing up. I'm exhausted since I wasn't able to sleep last night and can't lie down to take a nap without coughing my head off. Will try elevating my upper body tonight to see if that will help. I no longer have an appetite. I'm also shivering though I'm dressed in layers of winter clothes. I have a mild headache and slight queeziness. Of course, I'm willing to put up with all of this if it's working. But my first CT Chest scans showed progression in my lungs and liver.

    As you may remember, I tried Keytruda before and it didn't work and caused extreme mouth sores for a year and a half AFTER I got off the drug.

    May we both find a treatment that works or peace without treatments, if it comes to that.

    Hugs, Susan

  • bsandra
    bsandra Member Posts: 1,037
    edited December 2022

    Dear Husband11, good results are always a relief...

    Dear Susan, what does your MO or clinical investigators tell about these symptoms, are they "usual"?

    Saulius

  • nicolerod
    nicolerod Member Posts: 2,877
    edited December 2022

    Husband I am so happy for Stable news for you and your wife. I knew it would be good!!! Answered prayers!


  • susaninsf
    susaninsf Member Posts: 1,099
    edited December 2022

    Saulius,

    Strangely, I have gotten no feedback about my SEs. They are trying to help me with the symptoms but no understanding of the causes.

    Hugs, Susan

  • nkb
    nkb Member Posts: 1,561
    edited December 2022

    Susan, Was this 2nd cycle any improvement from the first? I hope so- and that early progression doesn't continue.

  • jsniffs
    jsniffs Member Posts: 136
    edited December 2022

    Hi all - Just chiming in on the topic of elacestrant. I'm currently in the process of trying to obtain it through the expanded access program. Thanks to weninwi, mods, and everyone else who has mentioned this drug. Fingers crossed!

  • mera
    mera Member Posts: 7
    edited January 2023

    Hi ladies,

    Has anybody on Gemzar noticed water retention (less urination), swollen stomach, swell of feet, hands?

    Thank you in advance!



  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited January 2023

    Hi mera. I just came off of Gemzar recently (wasn't working for me) but didn't have those symptoms. I only made it to the beginning of cycle three and found it virtually SE free. That changed at the start of cycle three when I suddenly developed a dry cough. Turned out to be lung toxicity. As it turned out, it didn't matter - significant progression in the liver.

    Ironically I have the opposite problem to fluid retention. Both of my kidneys are struggling, likely from pressure from the enlarged liver. I am constantly thirsty and have to make multiple trips to the washroom through the night. I seem to recall fluid retention is a reported SE of Gemzar… they always asked about it when I had chemo… but I couldn’t swear to it. I would let your MO/clinic know.

  • mera
    mera Member Posts: 7
    edited January 2023

    Thanks,dear! 🙏🏻

  • susaninsf
    susaninsf Member Posts: 1,099
    edited January 2023

    nkb,

    Thanks for the supportive words. I finished my second cycle but my SOB has been getting worse and the joint pain is bad. These days I struggle to walk 20 flat feet so even going to the doctor is hard. Had a chest x-ray today and my lungs looked bad but not worse than when I started PY-159. The problem is that, because of my SOB, I am also getting weaker since I can't do any sort of exercise. No yoga, no dance, no walking the dog. I can't lie down flat because of the coughing so I have to prop my body up when I go to bed. Not sure how they can scan me on Friday. I have a friend in the MITC support group who had to be knocked out during her scans because of her frequent coughing. She died on Sunday.

    I've been wondering if I have developed Ascites because my abdomen is extended and I'm not able to eat or poop much. Ascites also cause SOB. Alternatively, it could also just be overall inflammation. My Mom had to go to the ER on New Year's Day because she threw up everything she ate or drank. They believe it's from intestinal inflammation.

    Hugs, Susan

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited January 2023

    Oh Susan. I’m so sorry you are having such a difficult time. You have been in my thoughts so I’m glad to see your post but so unhappy about your SOB. Damn! I apologize but I’ve been so wrapped up in my own stuff that I have forgotten - do you have MPE again? Would a PleurX catheter be an option? Coughing is exhausting by itself but I remember well what it was like to try to walk 100 yards with a lung full of fluid. Hoping it’s not ascites. I have noticed my abdomen is distended somewhat but I think it’s just my enormous liver.

    My thoughts and prayers are with you. Stay strong.

  • bsandra
    bsandra Member Posts: 1,037
    edited January 2023

    Dear Susan, dang, sorry you are feeling this bad... and then things with mom...:/ Is someone helping you? Hope scans go well on Friday, and the x-ray is hopeful. Praying that the PY-159+pembro combo turn things around. Hugs,

    Saulius

  • eleanora
    eleanora Member Posts: 305
    edited January 2023

    Dear Susan

    So sorry to hear of everything raining down on you right now. Your description of the distended abdomen, not being able to eat or poop much is exactly what I experienced with my initial 600 mg dose of Kisqali and it turned out to be from intestinal inflammation. I know it's a long shot, but could your inflammation be from the same source as your Mom's?

    Sending positive thoughts and virtual hugs.

    Eleanora

  • susaninsf
    susaninsf Member Posts: 1,099
    edited January 2023

    Thanks, SS! I have two small pleural effusions, one in each lung. Probably not enough to cause this level of SOB. I hope I don't have ascites. Could be all of the inflammation caused by the trial drug. They've given me so many CT chest scans and chest x-rays and can't see anything new. My lung tumors are pretty bad though they haven't gotten worse since I've been on the trial. Only sleeping an hour at a time at night because of the coughing.

    So sorry to hear about your worsening liver mets. Very scary. For what it's worth, my palliative care doctor said that dying of liver mets is relatively peaceful. You just get more and more tired. On the other hand, people dying of lung mets are struggling to breathe.

    Hugs, Susan

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited January 2023

    Darn, darn, darn. It does sound like inflammation from the trial drug to me. Hard to explain the increased SOB with small effusions and no change in your lung mets. I read on your post on the lung mets thread that steroids are off the table but surely the trial team has to provide you with some kind of relief. Gasping for breath is horrid. Are you set up with home oxygen?

    Thanks for the reassurance re liver mets. Of course, that would presume it doesn’t spread elsewhere in between now and… well… whenever. Dealing with some persistent headaches which may be nothing but….

    I hope you get some relief soon Susan. Wrapping you in gentle hugs.

  • nkb
    nkb Member Posts: 1,561
    edited January 2023

    Oh Susan! I think of you a lot. I am so distressed to hear this! I was hoping the new meds would get you some improvement. How awful to be short of breath and sitting up to get a few minutes of rest. Lung mets seem to be a real challenge. I wonder how they would do your scans also- conscious sedation?

    I am having a rough cycle 6 with enhertu - lots of fevers and they think I have sepsis- one blood culture +- so heading to the hospital soon- so bummed. I do not have neutropenia-

  • nkb
    nkb Member Posts: 1,561
    edited January 2023

    Also Susan. I am so sorry to hear about your friend. It is hard to rally from this news

    too many leaving us

  • rk2020
    rk2020 Member Posts: 697
    edited January 2023

    susaninsf - I hope you can find relief SOON.

    Nkb - The hospital is the best place given your situation. I’m hoping they can treat you successfully and you start feeling better soon. Keep us updated Hugs.

    Nicolerod - Any update? You haven’t posted on this thread in awhile. I hope no news is good news.

  • nkb
    nkb Member Posts: 1,561
    edited January 2023

    Hi RK2020- thanks! I did so far get to avoid the hospital- a reprieve that surprised me an am on oral antibiotics until more info re blood cultures. My fever is improving. I did have an open wound on my arm which I think caused it- the ER doc wasn't impressed- it didn't look infected- but, I have appointment with my MO on Monday. Since I wasn't neutropenic my MO thought I could stay home- I don't think anyone but MOs are used to the numbers we have on our labs and they still do chemo etc. Very happy to avoid the hospital-

    How is your Trial going rk2020? I am very interested

  • rk2020
    rk2020 Member Posts: 697
    edited January 2023

    nkb - You’re moving in the right direction! I hope you continue to bounce back.

    Regarding the BLU-222 trial: The initial dose I was given was harsh. They quickly had to cut my dose in half and nobody else in the trial is being given that high dose any longer. The half dose isn’t the easiest (I’m very sensitive to drugs) but I’m getting a handle on the side effects of nausea (never had this on other drugs) and diarrhea. I was having bad reactions to the anti nausea drugs but I seem to be tolerating drug number 4. Number 4 has a side effect of being constipating so the upside is that I’m no longer taking my lomatil for diarrhea. It’s a little win but it’s a win in my book. Who would think it’s such a delicate balance between pooping 8/9 times a day and constipation. Anyway, side effects aside I think I’m seeing results. After 28 days, my tumor markers went down 👍 and I have less pain 👍👍. Unfortunately I do have a new pain this week at the very top of my spine where it meets my skull. It’s a strange pain like no other neck pain I’ve had. I have sclerotic lesions in my cervical spine and skull. I hope nothing has decided to re-ignite. If I’m still having the pain in a week or so or if it gets worse I’ll bring it up to my MO. On another note, I decided to have a port placed today to give my poor left arm a break from some of the needle stick. I couldn’t get my early stage port removed fast enough and here I am voluntarily getting another inserted. Oh how MBC changes us

  • nicolerod
    nicolerod Member Posts: 2,877
    edited January 2023

    RK2020 thanks for asking about me... I am hanging in there... I just did my 6th infusion of Gem/Carbo... I have a BRAIN MRI on Feb 1st then on the 13th I have CT of Lung then 14th MRI of Liver and PET... praying this is working though I think I am chemo resistant....

    We have a lot on our plate right now...my husband got orders for us to move to SC....but they are giving us till Sept..which is fine bc I will probably be dead by then..however if I am not....we need to decide what to do here is the dilemma...

    1. There are NO BREAST CANCER ONCOLOGISTS in the entire state of SC. They only have "regular" oncologist...and with me being Triple Negative now..and most likely needing to go to a trial...I am probably better off here in Northern VA near DC.

    2. If we stay here in VA they can allow us 1 year to stay...but then when I die those orders for SC will be gone and they can send my husband to Japan..or Cali etc... and our kids are moving from NY to SC in November....so we wanted David to be near them and our grandbaby.

    So basically as much as I want to stay here ...it think ...I should put David first...bc I am going to die anyway..at least them he will be near our kids and grandbaby.... its so hard... :(

    If anyone has anythoughts please tell me...


  • rk2020
    rk2020 Member Posts: 697
    edited January 2023

    Oh Nicole, you are carrying so much weight on your shoulders. I wish I could offer some sage advice but I’m coming up empty handed. I know when I think of leaving my husband behind, I am secretly planning things to make it as easy as possible on my husband as possible. But my concessions are small making the decisions easy. I wish you success on gem/carbo and peace in your mind and heart making the decision regarding your husband’s orders. In your pocket for the flurry of scans in February. ❤️

  • nopink2019
    nopink2019 Member Posts: 384
    edited January 2023

    Nicole. Your issues make mine pale in comparison. I'm more in line with rk, not trivial, but I don't have to consider a move. I hope your scans go well. That should help with your decision making. I do totally understand wanting your husband to have the support of children and grandchildren. All the best possible to you and your family. Keep us posted

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