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Starting Chemo May 2021

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  • annsoptera
    annsoptera Member Posts: 27
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    BLMike - Thanks for the update on Polly. I'm glad to hear her MO is exploring what's going on and considering some options, and I'm sure it will be good to get some clarity on that soon. I can understand how a potential switch would cause anxiety!

    MaineJen: I second what BLMike says! That's incredibly unprofessional and insensitive treatment. My fingers are crossed that you only get angelic nurses from now on! I hope you're feeling better this week.

    And AlwaysMeC: I hope the blurry vision has improved and that you're doing well.

    Welcome, SylviaStrides! I hope your treatment yesterday went well and you're having few side effects so far, including from the Dexamethasone. I'm glad that you've found the posts here to be helpful. I've been amazed and how much useful information I've come across on this topic and others.

    I had my latest treatment (TC #3) yesterday too. So far, I'm doing okay but I usually do on Day 2. My MO is concerned about the "rash" on my arm from my last infusion site (I don't have a port) which she suspect could actually be a thrombosed vein, so she's sending me for an ultrasound of that. And she's also concerned about the tinnitus I've had since round 1, so she's sending me to an ENT. Just what I need... more tests and doctors! It feels never-ending sometimes.

    I hope everyone has a peaceful weekend!


  • mainejen
    mainejen Member Posts: 148
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    AnnSOptera: Oy with the rash on your infusion site. I have had trouble with both sites so far too - no port for me either and yikes. It's brutal. I actually spoke with the doc about it today as well. And tinnitus!? BRUTAL. More tests and docs indeed. It DOES feel never ending. I have had so much trouble with my liver that I had an emergency MRI the other day - they thought maybe the cancer had spread. Talk about a nail biter. Thankfully, nope. But on top of all of the side effects we all endure, to have scares and additional tests too.... I mean, really. :( One day we are living our lives, the next day we have cancer and it just feels like a slippery slope covered in banana peels. Right now I can tell I'm fighting a really bad bad bad headache onset. I maybe had 3 headaches previous to chemo in my whole life - and nothing like the killer I've experienced since starting this tx. I'm really, really hating this! I know we all are. I don't know how many treatments you're going to do, AnnSOptera - 4? I'm doing 4 total. I've now had 2. I am just dreading the ongoing onset of more and more probs. But I keep reminding myself, it's a small price to pay to get a chance at living a longer life. Still, yikes.Sending you and everyone so much love and I just wish I could hug each and every one of you. Or that we could all sit together - literally - during treatments to support one another. I know we're everywhere, all over the country and world. I just wish. Anyway, love to all. Every tear I shed, I shed for all of you as well. You're all in my heart all of the time.

  • annsoptera
    annsoptera Member Posts: 27
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    Hi MaineJen: I had a killer headache, worst I can ever remember (couldn't sleep etc), during my first round (I'm doing 4 rounds total, like you). You can read about in my earlier posts in this thread and what finally brought some relief. For round 2 they told me to alternate Advil & Tylenol every 6 hours around the clock to hold it off, and that seemed to work. I had a little headache on the periphery at times but it was totally manageable, unlike the first round. I'm doing this again for round 3, and my fingers are crossed that it helps. I don't like the non-stop pill-popping (and now my MO wants me to start Prilosec to protect my stomach from all of this stuff...it's like layers on layers of meds, all counteracting or protecting me from each other), but just like you said, it what we need to do right now. I am thrilled to hear that your liver scan came back okay! I'm sure you were sweating that one. I'm so happy for you that you have that scare behind you.

  • mainejen
    mainejen Member Posts: 148
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    Hi, AnnSOptera: That's exactly the protocol for headaches I was told about. Because of my liver issues (new since chemo), I have had to be careful to avoid Tylenol. OYyyyy. But I started with ibuprofen and was able to hold the worst of it off last night - like you, it was there but not the killer like last time. Sheesh! At least today I woke up thinking "hmmm. maybe today won't be so awful." I do have a new rash though. LOL. Endless! You're so right the "non stop pill popping...layers on layers of meds, all counteracting or protecting me from each other" - that hits me so hard. It's a precise description of my thoughts/feelings. Really? MORE meds? But if I take those, then I have to take more! Anyway, thanks for your kind words about the liver thing. Yes, that was terrifying. Truly. Something new keeps happening. My biopsies told them no nodes were involved. After the first surgery, pathologies came back - I had node involvement AND I had to have another surgery - they didn't get it all. Anyway, the outcome of the MRI was the first bit of relief - I'm starting to get used to having bad news when I hope for good news. That was the good news I needed for sure. Now we just have to be sure my liver doesn't sustain permanent, long term damage from the chemo! :) Anyway, thanks for your note. Love to you and everyone. I hope everyone has a lovely day today - or at least a not-horrific-suffering-terribly too much day. Talk about a low bar! That's my measurement now: did I struggle to make it through the day or did I endure misery? Hugs!

  • blmike
    blmike Member Posts: 195
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    MaineJen -- Sorry about the headaches but thank goodness it hasn't spread to your liver. That's a huge relief! Small victories!

    AnnSOptera -- I hear ya on the pill-popping. Polly hates that too, but since it's the price of QOL or extending life, she's beginning to start to think about accepting it. LOL.

    The latest blood results aren't good here. In fact, her liver enzymes are so bad, her MO has asked Polly to get a scan next week (before the next scheduled Abraxane treatment on Friday). Of course, any urgency by her MO simply creates huge anxiety in us. Further, Polly's having trouble getting that scan scheduled in a timely manner, which just creates more anxiety all around. As MaineJen said about suffering: this is our new measurement now: huge anxiety or just a medium amount. Best of luck to everyone.

    STJA16 -- Just wondering how you're making out? We're thinking about you and hoping for the best.

  • mainejen
    mainejen Member Posts: 148
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    BLMike: I just want to write here - I think it is so beautiful that you are here on behalf of Polly - your wife. I've been catching up on threads here - and Polly is one lucky woman to have you looking after her and loving her. It is just amazing. What a beautiful thing. I'm so sorry to hear about the liver enzyme thing that's happening now and the struggle to get the scan scheduled. God it is just all so anxiety-provoking and intense. People who don't go through this cannot fathom the gravity/immensity of it all. Then again, why should they? I wouldn't wish this on anyone and maybe 50 years from now, this cancer thing will be solved. For now, I'm holding you and Polly in my heart and prayers. It's just too much. :(

    I hope things go smoothly and you both get your needs met soon ( on many levels). For now: sending warm thoughts to you and Polly and to the whole crew here.

  • amy123
    amy123 Member Posts: 6
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    MaineJen - Thank you for thinking about me during my tx. My second tx went very well. 😊 (Only 4 more to go now.) Much similar to your experience, I'm having blurry vision again. So I cut off dexamethasone completely. I'm so sorry to hear about the horrible nurse at your last tx. It was so rude and unprofessional of her. Going through chemo and having veins being poked multiple times is so much to deal with. I can't imagine having to put up with her insensitivities. I can't even imagine crying at the hospital during treatment. It literally made my heart sank. 😥 I wish I could hug you and make you feel better. Please don't despair. If they were in our shoes once, they would not be so inconsiderate. I will also pray for you to have the angelic nurse in the future and every nurse takes care of you will be as sweet as her. I hope you are doing better now. Best of luck to your third treatment next week! You seem to be very positively spirited. You will get through this! Sending you virtual hugs! PS: I also had really bad headache 2 days after my first round of chemo. None of the prescription pain killers worked. On the third day, I start having liquid food for meals, porridge and chicken noodle soup, chicken wild rice soup etc. It alleviated my headache completely. I also drank only warm tea instead of cold water. It's lot of hydration and none of the hard on stomache. I hope this helps! 😊 You seem like you have a lot on your plate with your biopsies and MRI etc. Hope there will be better news for you soon. You will be in my prayers!

    AlwaysMeC – Sorry to hear that you are getting blurry vision too. I lowered my dose on dexamethasone but it's not helping. I stopped taking it yesterday. But I'm glad to hear that it is only temporary. I'm so relieved! Sounds like you, MaineJen and I are almost on the same schedule. Keep me posted gals! 😊

    BLMike – Thanks for the warm welcome. I'm happy to be here. 😊 Hope everything goes well for Polly's scan. Good luck with her 3rd TCHP! Mine is on July 8th.

    AnnSOptera – Sorry to hear about the rash on your infusion site. I hope your ultrasound and the visit to the ENT goes well. Sounds like you are having a very tough time from chemo. All of a sudden my petty backache and nausea don't seem so rough anymore. You are a strong lady! Hope you are managing your time well and don't get overwhelmed by all the tests and doctor's visits. I hope they yield good results. But it's better to have them checked out than risking complications, right? Hope you are having a great weekend too!


    Thank you for your replies. I'm so glad to be part of this supportive community. Hope everyone stay strong in the battle with cancer. Even though we are so far apart. We are all going through the same thing in different ways. At the end, all of our struggle will worth it! You will all be in my thoughts.

  • moderators
    moderators Posts: 8,219
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    Just an FYI:

    Hug TODAY: Zoom virtual meet-up for people going through chemotherapy (caregivers welcome)

    Tuesdays 1:00-2:00 PM Eastern Time (US and Canada)

    Register in advance for this meeting

    After registering, you will receive a confirmation email containing information about joining the meeting.

  • STJA16
    STJA16 Member Posts: 55
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    It's been a short time since I posted.

    SilviaStrives, thanks for sharing. Looking forward to hearing more.

    AnnSOptera, I had some headaches also. They said one of the Cytoxan could contribute but described as sinus headaches so i take Tylenol sinus pain. Glad to head the Tylenol, Advil combo worked.

    I did have cycle 3 of TC today. I am a bit anemic but not enough to stop the cycle or to get shots or medication...weird. I do take iron and they said not to double up so I guess I will be eating spinach with every meal. So far i feel very tired as usual. Expect the symptoms to build over the weekend. The newest twist is the insurance company would not approve the Oncologists pharmacy to dispense the Neulasta shot with cycle 2 so they gave me Zarzio which I had to get a shot every day for 8 days. Lots of bone pain every day but the blood count improved. After much back and forth, they approved for cycle 3 and 4 but agreed to mail it to me via ice packed UPS shipment and I have to do the injection at home. I had to take a picture of the package and the dispenser / syringe and my nurse today taught me how to do it. I will need to do the shot tomorrow. FYI, they approved the inhouse pharmacy before with cycle 1 but changed their minds this time. They were managing costs. It all worked out.

    Glad to read your posts and get caught up. Hope everyone is doing well.

  • blmike
    blmike Member Posts: 195
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    Scan update: My wife, Polly, had a scan on Monday and the results indicate "improvement in both lungs and liver tumors". All of the tumors they measured shrunk. WooHoo! Frankly, in the 6 different treatments Polly has tried, this is the first time that we've seen actual shrinkage in the tumors. We are thrilled with the results.................finally. Just thought I'd share a chemo-success story since chemo is so traumatic (physically and mentally), but in our case, it's definitely been worth it.

    Best wishes for the entire May-chemo crew.

  • lw422
    lw422 Member Posts: 1,404
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    What wonderful news for Polly and for you, Mike. Yippee!!

  • mainejen
    mainejen Member Posts: 148
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    BLMike - HOOORAYYY! That's FABULOUS news. Thank you for sharing that! We are all holding you and Polly in our hearts and prayers. OMG that is such good news. So much to endure, but it's worth it! YAYYYY!!!!

  • mainejen
    mainejen Member Posts: 148
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    hi everyone. Just thinking of you all. I missed our weekly online support group this week. I am sending you all loads of love. I go in for my 3rd round of TC tomorrow. One thing is for sure: I'm not going to stand for a crappy nurse who digs around in my arm again and says things could be worse and nonsense like that to me while I'm there. I was in a very vulnerable, scared place last time. This time, I will fully expect an excellent, caring nurse who treats me with kindness and respect and doesn't scare the shit out of me. LOL. Anyway, I also had my "radiation" orientation yesterday. Sheesh! It all seems to just go on and on. But I'll focus on getting through today, now, this moment first. It's too much to think about everything at once. Love to all.

  • annsoptera
    annsoptera Member Posts: 27
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    BLMike -- I'm so relieved to hear that fantastic news about Polly's scan! And you are so right about how gratifying it is to see that she is enduring all of the trauma of chemo for a very good reason!

    MaineJen -- I hope all went really well for you today with TC #3 including receiving excellent, compassionate care from the nurses!

    I hope all of you are feeling well and managing okay with the various challenges of treatment and all that it involves and brings on. Have a restful, lovely weekend. Sending love and hugs to you all.

  • mainejen
    mainejen Member Posts: 148
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    Hi All,

    Wow. This has been the roughest part of the road yet. I had great nurses again on Friday, thank goodness...I was certainly ready to take a stand this time around and not fall apart like last time. LOL. I didn't need to say a thing this time - a huge relief. That said, this 3rd round has knocked me off my feet. It is really intense. I don't mean to be dramatic about it, but there are moments when I feel like the poison may kill me and not save me. I know, one minute at a time. But holy cow. My red blood cell count is super low, along with all sorts of other things and I just hate this so much. Sorry to complain. I just cannot wait for this to be over. I know you've all felt this way too at various points. Sending love and hope you're all in a better place than me today. :(

  • moderators
    moderators Posts: 8,219
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    Just FYI: TODAY: Zoom virtual meet-up for people going through chemotherapy (caregivers welcome)

    Tuesdays 1:00-2:00 PM Eastern Time (US and Canada)

    Register in advance for this meeting

    After registering, you will receive a confirmation email containing information about joining the meeting.

  • annsoptera
    annsoptera Member Posts: 27
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    MaineJen - I'm so sorry to hear that TC #3 has gotten off to a rough start for you. You are totally entitled to vent about it (especially here of all places) and no need to apologize! I hope you're feeling much better today. But I'm glad to hear that you had wonderful support from the nurses. I'm sure that was a relief and comfort. I did my 3rd round of TC 3 weeks ago and while the immediate side effects were pretty manageable, I've found that my recovery was slower, and I never quite got back to feeling pretty normal, especially in terms of my stamina and strength.

    And I am scheduled for TC #4 this morning. I have every finger and toe crossed that my counts are high enough to go forward. Like MaineJen (and the rest of you too, I'm sure), I cannot wait to be on the other side of this!

    I hope everyone's doing okay today.

  • mainejen
    mainejen Member Posts: 148
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    Hi, AnnSOptera - The third round of TC is super difficult omg. I hope today that you are able to go forward and get this over with! I'm so excited for you to be on the other side of this! Please keep us posted. Thinking of you with so much hope and positivity in my heart. Hugs to you and everyone.

  • annsoptera
    annsoptera Member Posts: 27
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    Hi MaineJen - Thanks for the encouraging words! Fortunately, I was able to get my treatment yesterday. I was concerned because my numbers were low for my 3rd treatment and I've been feeling so sapped of strength. But my counts were actually up a bit. The only other concern was the tinnitus and whether to pause the treatment until I can see the ENT in August. I said I'd take my chances. I need to get this stage of my treatment over and done asap, particularly due to work. So far I'm feeling okay, but I usually do the day after treatment. Hopefully, the effects won't be too tough for this round. I hope you're starting to feel a bit better in your round 3!

  • mainejen
    mainejen Member Posts: 148
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    AnnSOptera: OMG the tinnitus! That's awful. I had forgotten you were enduring that too! I can't blame you for wanting to get this over with and then deal with that and anything else afterwards. I'd, too, take my chances just to be done. But I'm so sad that you are being dogged by this tinnitus thing. I had a brief encounter with that just before cancer - and it was awful. OMG. It is sooooo hard! Anyway, I hope that resolves sooner than later....and I'm glad you're ok so far, and I hope that whatever comes, it helps you to endure knowing you've got that last infusion behind you. That's my fantasy about the next one - no matter how gross I feel, at least it won't be anything I'll have to do again (I hope)? Anyway, "sapped of strength" is the best description. Yes. That is it - completely. There are other issues, of course. But that bottom line - the feeling of just everything being really, really slow and tough - normally being someone who is well and active - that is soooo hard. I get you on that. Sending strength and no matter what you feel in these weeks, maybe it will help psychologically that there will be no more infusions? Holding you in my heart. And everyone else here too.

  • STJA16
    STJA16 Member Posts: 55
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    Hi all

    My third cycle of TC hit me hard as with some of you. It is day 12 and I am feeling much stronger. But I have one final cycle to go in just over a week and i am weirdly looking forward to it. I asked the nurse practitioner what happens next and she said the oncologist will go over a long term plan with me when I go for cycle 4. Guess I have to be patient. I will be returning to work the day before cycle 4 and will take it easy for the first fee weeks.

    Glad to hear the updates from you all.

    I encourage newcomers to share as you feel comfortable. It really is healing to be able to share.

    Have a great week.

  • Girlbond007
    Girlbond007 Member Posts: 3
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    Cycle 4 update:

    I thought I was holding it together well despite my horrendous GI issues but cycle 4 seems to have knocked me pretty bad. Have had no energy even for my 30 min walks, having a hard time even drinking water cause nothing tastes good, had a nose bleed last night and realized that I was famished cause I have not been eating enough. This along with stomach cramps and non stop Tylenol and Immodium dosing is just bringing my spirit down. Hoping next week passes gently. Having a hard time thinking I have two more cycles to go. Sorry to be such a downer today. Needed to let it out.

  • AlwaysMeC
    AlwaysMeC Member Posts: 107
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    STJA16, best wishes with your 4th cycle. Can you believe it's already almost mid July?

    Girlbond007, can you ask your infusion center if they can offer iv fluids? I will be going into the center tomorrow for a follow up and figured I might as well ask for fluids. I'm one week out from my 4th of 6 TCHP sessions. In the beginning I was drinking water without issue, but it seems these last two sessions, my mind has just not been motivated enough to want to drink. The hardest part of this breast cancer seems to be the mental challenges that come along with treatment.

  • STJA16
    STJA16 Member Posts: 55
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    Girlbond007 hang in there. Definitely ask for fluids. I get fluids for 2 days after chemo.

    AlwaysMeC. Yep July already.

    Last night i felt some pain near my chemo post. Called the doctor today and they wanted to see me. It is slightly swollen and now a bit red. They think the port is infected. They gave me IV antibiotics and took lots of blood. However they did not use the port for the antibiotics as they said you can't use an infected port. Now i have to go to my surgeon tomorrow to check on it. Not sure what this means for my infusion next week. They want blood test results first. I also have to take antibiotics for a week. It is always something. I was just looking forward to my last cycle.

  • mainejen
    mainejen Member Posts: 148
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    STJA16 - Ohhhh nooooooooo. That is a HUGE bummer. You must be frustrated/disappointed. Doesn't this process always bring something new and unexpected in unpleasant ways? I'm so sorry this is happening to you. You're right. It is always something. Sheesh. Keep us posted and just know I'm keeping you in my heart. Oy. You poor thing! HUGS

  • annsoptera
    annsoptera Member Posts: 27
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    Girlbond007 - I’m sorry that this round has been so rough. I hope you’re feeling much better very soon. GI issues can wreak all kinds of havoc, including dehydration and fatigue.

    STJA16 - Please keep us posted on what you learn about your port and infusion schedule. Our fingers are crossed for you!

    And to AlwaysMeC and all of you… yes, we’re now all a few months in to this chemo adventure, doing our very best to manage it all. We’ve learned a lot and supported each other. And we’ve kept going. We can and should extend compassion and gratitude to ourselves for doing what we needed to do, day after day.

  • blmike
    blmike Member Posts: 195
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    WOW! It's been a tough week for the May Chemo crowd.

    Girlbond007 - I'm so sorry to hear about your GI issues. There's nothing wrong with letting it out.......especially here.

    STJA16 - A port infection. Yikes! That was one of my wife's big concerns. Best of luck. I can't imagine your frustration.

    Speaking of my wife. Our good news was short lived. An MRI discovered a tumor on Polly's brain. She's currently in the hospital with brain surgery scheduled for the morning to remove the tumor. It's pretty big about 2 inches (5 cm), but it's in a fairly accessible spot so the neurosurgeon is confident he can get it. This has really shaken her up though (me too). She's been really positive (despite the Stage 4 diagnosis), but brain surgery really has her down. Hopefully we can get through this so she can restart chemo after recovery from surgery in about 3-4 weeks.

    Hang in there May Chemo woman! Better days are ahead (at least I sure hope so).

  • AlwaysMeC
    AlwaysMeC Member Posts: 107
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    AnnSOptera, thanks for the encouragement.

    BLMike, please let Polly know I am thinking of her with positivity, as I am sure we all are. I hope her recovery is not difficult.

  • mainejen
    mainejen Member Posts: 148
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    BLMike - holding you and Polly in my heart. How scared and shaken you both must feel. Keep us posted and we'll all be thinking of you two. Loads of love and I hope her recovery is smooth and not too awful.

  • STJA16
    STJA16 Member Posts: 55
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    BLMiKe, praying for you and Polly. Hang in there

    Port pain is increasing. My breast surgeon said someone at the oncologist is not following full procedure and thats how it got infected. I now have a slight temp so planning to call them again tomorrow. I am more than frustrated