July 2020 chemo club
Comments
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How fun iamloved, what great hats! And what great friends. It’s obvious your username fits.
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Iamloved - LOVE your pics! Looks like you hit the friend jackpot
Hope everyone is having a great weekend! I'm enjoying a beautiful day - finally some low humidity. Have infusion #3 tomorrow. Fingers crossed for SEs the same or less than before!
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Good morning, everyone!
Britonkb, thinking about you as you go for your third infusion today and hope all goes well.
Melbo and Iamloved, glad to read that your infusions went well last week.
Iamloved, fantastic pictures of you and your friends! On the topic of intermittent fasting, this may be of interest to you and others here:
https://www.breastcancer.org/research-news/can-fasting-reduce-recurrence-risk
Melbo, yes, to your question about the cold except mine feels like cold chills instead of the deep cold that you described.
Nottoday, hoping all goes well for you with this week's infusion on Friday.
Kimintx, that's great that your liver enzymes have returned to normal!
Wishing everyone a pleasant week with minimal, or no, discomfort.
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Brittokb Thinking of you today.
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Shar2020 Thanks for the link.
Today is only day 5 and it has been rough. Cramps from constipation and throwing up ( thankfully just once) I talked with my oncologists office and they said to try every other day with the RX for diarrhea. I need to find some balance between the two extremes. Fatigue and lack of any energy are with me constantly. I so wish I could feel better! I can't imagine 3 more rounds of this!!! I asked my COC oncologist why 6 rounds is the magic number. He said it is just that...a number...3 might do the job 2 might but for now everyone does six. They have found some cancers have responded with 3 but no one has studied BC or so he said. Makes no sense to me. I have a video appt with my surgeon's office Wednesday and I hope she wants imaging done. I think I would feel better knowing this is actually working and that these treatments have not been wasted. Sorry for the rant I just feel lousy and I think Hubby is tired of me being sick too. Prayers for all to get through these treatments.🙏🤗❤
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Hey everyone!
I’m to the point where I’m counting the days until I go back for more chemo 😢... 8 days. There’s never enough good days. At least I will have an enjoyable long weekend at the lake with my family! I usually go in Tuesday’s at 8am, and am finished about 1:00, but because of the holiday they won’t have my drugs there until 1:00.
I was able to do some cleaning today...scrubbed my tub and did laundry and mopped floors. It felt good to do some things around the house. I’ve felt so sick and tired this cycle. I needed to take my nausea meds for a lot longer I learned.
Food still doesn’t taste very good, but I’m not having the nausea so I can at least eat.
Hope everyone else is having a fabulous week
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iamloved: I forgot to mention...my nurse recommended I take Colace for constipation. I have noticed that I am more constipated for the first 4-5 days, and then the diarrhea sets in and Imodium is then needed.
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Iamloved — I’m sorry to hear your round is going poorly.
I am day 5 today after round 2 and am doing mostly okay. I have been diligent about rinsing my mouth which has prevented mouth sores (so far) and other than the exhaustion and some mild stomach cramping and heartburn, I have been doing okay. I do expect to rest/nap a lot today though, although I did manage to get dishes done and a couple of other small chores. My appetite is non existent today though, which will probably affect my energy.
The super freezes seem to be under control for now and I just feel chilled more than I think I should. At this point I just live in sweatshirts and keep blankets handy even though my house isn’t that cold.
Even with relatively good reactions this time around this entire experience is crap. I really feel for you guys who are suffering through this round
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I spoke too soon. Minutes after saying I felt fine the painful stomach cramps and diarrhea kicked in hard. I don’t normally believe in jinxing myself, but that was ridiculous
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Iamloved, mtspacekace and Melbo, very sorry to read that you are having these side effects.
Iamloved, I hope all goes well with your appointment on Wednesday.
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Good morning, all. Third infusion and an ultrasound tomorrow. I go to the infusion place first to get my port accessed and get blood drawn for labs, then head upstairs for an ultrasound with my BS to see the progress after two completed rounds. I can feel the tumor has shrunk, but I’m of course worried I’ll hear something equivocal, like, “Well, it’s smaller, but by now we would expect to see X and instead we are seeing Y.” Hoping for an unequivocal, “OMG you are amazing and you’re the BEST at having cancer and you win!” Not sure my septuagenarian surgeon is an OMG type of guy though! 😆 Still, any kind of good news would feel sustaining as I submerge into the depths of SEs next week.
My five year old goes back to school in person on Tuesday (half-days at first) and I’m nervous about that, but in consultation with my MO and after the kindergarten orientation via zoom yesterday (during which she alternately refused to sit up, kept unmuting herself when it wasn’t her turn, and jabbered at me when I was trying to listen to her teacher), I think in-person is the right choice for our family! I hope everyone has a peaceful day.
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Good morning ladies! I had AC #3 on Monday. Biggest SE has been fatigue but managed to work a full day yesterday so I count that as a win. I got on my bone pain from Neulasta earlier this time which helped. My MO is having me take ibuprofen for that and seems to be helping along with the Claritin.
So sorry for those of you with not so great SEs. Hope they ease up for you to enjoy remaining days until your next infusions!
Anna - prayers your way that your tumor is responding well to the treatment and is shrinking away!
My kids started back to school last week. So far in our district of 4,500 kids (9 buildings) there have been 4 positive Covid cases. Hoping the low rate continues. Meanwhile, my father in law is in a nursing facility and they've just confirmed 30 positive resident/staff cases there. All of the cases are confined to one area (not his) but we are still nervous. He has Alzheimer's and we haven't been able to visit him since March other than through FaceTime (thank goodness for technology!).
Good luck to everyone with upcoming infusions, ultrasounds, etc!!
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AnnaTheBrave, wishing you all the best with your third infusion and ultrasound tomorrow. (My third infusion is tomorrow, too.)
Brittonkb, great that the medication is helping with the bone pain this time and also great that you could work a full day yesterday.
For everyone with upcoming infusions, appointments and tests, I hope all goes well.
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Good morning! Just got hooked up for TCHP #3. Has my u/s with my BS this morning and his exact words were “Damn damn damn, woman! Where’s your tumor!?” He found the clip that he inserted during biopsy and said it appeared to be surrounded by normal tissue. Same for the lymph nodes. Of course the surgical pathology will tell the tale, but very encouraging!!! And he also asked me if I was cold-capping bc he couldn’t tell I was wearing a wig—he even called a bunch of people into the room to show them bc he couldn’t believe how real it looked. That was a nice boost to my self esteem because I still feel so weird and conspicuous when I wear it.
Hope everyone has a quiet day with beautiful weather and diminishing side effects! Shar2020, thinking of you today, my infusion schedule buddy!
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Hey everyone!
Ive been having some pretty good days, and they feel ohhh so good! Food tastes pretty good, definitely not normal, but good. Water is even tasting refreshing, and I’m not needing the imodium. I’ve been fatigued and tired longer this round, my energy hasn’t bounced back as quickly...I feel good, better than full on chemo effect, but not great. It must be cumulative. I really hope #4 is kinder than 3. I hope they don’t continue to get worse. I go in for bloodwork tomorrow...and then will be spending the long weekend at the lake, getting some relaxation and refueling for Tuesday when I go for #4. I usually go in at 8am, but since the holiday on Monday my drugs won’t be to the clinic until Tuesday at noon. I hope going in later doesn’t screw everything up... At least I have Tuesday morning to get things settled around the house and go get my pre chemo mani/pedi. I hope everyone has a great long weekend!!!
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I hope infusions went well yesterday!
This has been a strange cycle for me. I am very, very easily fatigued, but I have also had energy to try to get some things done. On the other hand, my stomach has been queasy enough that I have spent long stretches laying on the couch because sitting up seems like a bad idea. I've had a few terrible rounds with diarrhea, but Imodium has controlled it once I get past the first unpleasant experience. Water has tasted terrible so I have been fighting myself to get drink enough -- watered down gatorade seems to be my best bet because everything else tastes full of chemicals or harsh. I have had enough appetite to be hungry, but then once I start eating I usually manage a few bites and I've had enough.
I don't think I have mentioned it here before, but 2020 was supposed to be a huge year of change for my husband and me. We were supposed to move overseas in April, something we had been planning for and working towards for a long time. We got delayed by COVID of course, and then by the time we had a new date for the move I had my breast cancer diagnosis so we had to say no to the move. It was heartbreaking. I had been dreaming about all the travel we would do and everything we would see and do for years. Sigh. One day we will make it happen. In the meantime though, we did make reservations to stay in a cabin up north over a weekend in October so we can take pictures of some scenic places and the fall colors. It's not Europe, but it's something that has been on my list for a while to do and we're going to make it happen this year, despite the stupid cancer. It's nice to be making plans and trying to live our life despite the terrible circumstances we find ourselves in.
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AnnaTheBrav…How awesome 👏👏👏 Makes the side effects seem worth it.
mtspacekace...when you mentioned water is refreshing it hit me. That is what is missing in my life. Refreshing water. I used to drink tons now I struggle with fluids. Besides tastes I miss bring refreshed! Enjoy your lake weekend.
Melbo...I feel bad your plans got messed up by this disease! We spent 2 weeks in italy for the 2nd time in Feb 2020 right before covid. We have talked about going there for our retirement instead of the usual places, Phoenix Texas Florida. We would spend 1 month to 6 weeks in Italy each year. Such a dream! With this dx all plans take a back burner. I enjoy looking at my pictures all the more now.0 -
Melbo, so sorry all this messed up your plans for Europe. I hope you will be able to make that happen when you are on the other side of this.
Annathebrave, so great your chemo is working so well!!!!
To everyone else, have a great, relaxing, safe Labor Day weekend!
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Hi everyone! I hope you are having a pleasant Saturday.
AnnaTheBrave, I was excited for you when I read your doctor’s comments. That is fantastic news! I hope you are feeling well since the infusion on Thursday. The oncologist examined me before my infusion on Thursday and she couldn’t measure the breast tumor because it has reduced to a thickening with no defined edges. Yay, you and I both got great news!
Melbo, I am sorry to read that your exciting plans had to be postponed because of the pandemic and your diagnosis. That is so disappointing! I hope your dreams and wishes carry you through all this and you enjoy everything when this is all over.
Mtspacekace, wishing you a pleasant weekend at the lake.
To everyone commenting about taste, have you noticed it with sweet, salty, spicy, sour, bland and/or everything? Mine is significantly worst with sweet foods, including fruit. Chocolate and applesauce have tasted absolutely vile since the first infusion so I don’t have it now. Surprisingly, I crave garlic bread which I almost never ate in the past. 22 lbs less now so I hope not to lose anymore.
Wishing everyone an enjoyable weekend with little or no discomfort!
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So nice to log in and read so many well wishes and be part of such a supportive group. Am feeling down today because I'm having hot flashes, which aren't terrible so far but are new this round, and things like that keep happening to remind me what a long f###### haul this is going to be and that, holy s### I actually do have actual cancer (wtf!!!), and I'm pissed I'm probably saying hello to menopause at 37. And then I go down the rabbit hole of all the things that lie beyond chemo and surgery, with fascinating phrases like “vaginal atrophy." I mean, I hope I live to experience vaginal atrophy, don't get me wrong! And if I never get my period again, I'm ok with that, but what am I going to do with all these tampons in my bathroom closet?! 😆 But I really am so grateful for my and others' good news and am so sorry we are all guessing and dreaming and hoping we can figure out where our tracks are headed now, when we thought we knew.
My taste changes start on day 3, with a sour taste in my mouth. Then anything that has any sour note to its flavor, like grapes or strawberries, that's all I taste is the sourness and it's gross. Sweet things then begin to taste very flat. Then everything just tastes weird and bad and flat, and salty things taste way overly salty but otherwise flavorless. I have been very lucky that plain cold water has remained palatable. The first two rounds, I had probably about five days before the next round that my sense of taste was pretty close to normal.
Thinking of you all. Very grateful to have this space.
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Good morning all!
I'm so happy to hear about positive US results! I had my surgeries prior to chemo so can't totally relate but must be nice to see some positive results from chemo.
Melbo - So sorry to hear about your plans being derailed by this horrid BC. We have 5 years before my youngest heads to college. My husband and I have been very diligent about saving for retirement/college, planning for an early retirement so we can travel when the kids are out of the house. I already find myself worrying about recurrence and what it could mean for those plans. We've always gone on summer trips with the kids, but are going to make the effort to take more trips whenever we can fit them in.
Anna - Hope you are having a better day, but you have every right to be pissed! I assumed I would go into early menopause but actually had a fairly normal period this past month. I was pretty disappointed by that but hadn't let myself think about hot flashes and vaginal atrophy.
My 3rd round of AC was pretty similar to the previous ones. I tried to get ahead of the bone pain but unfortunately still had it for a day or two. I can also tell that the fatigue is cumulative. I tire out much easier than normal. I'll have my 4th and last round of AC on the 14th and then start 12 weekly Taxol on the 28th.
mtspacekace - I hope the lake is wonderful. Not sure where you are in Montana but we took a road trip up there a couple of years ago and spent time at Whitefish and Glacier. We LOVED it.
I hope everyone is enjoying the weekend!
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I have been to Germany and Italy a couple of times for vacation, but living there was going to be a whole different experience. Luckily it will still be there in the future, and since my cancer is ER/PR negative, I shouldn’t have to be on hormone suppression for years on end. It makes me feel guilty occasionally that most of you have all the hormonal stuff to deal with in top of the cancer... like my cancer isn’t quite as worthy. Which is stupid I know — it still sucks, even if it doesn’t suck quite as much as what most of you are facing.
Anna — I’m glad I’m not the only one who periodically looks around and says “how the eff do I have cancer?!?” It’s still surreal most of the time, even while dealing with the various side effects from treatment.
Speaking of side effects — I’ve spent the vast majority of the last two days (days 9 and 10) sleeping. Today the Imodium is also struggling to keep up with the Perjeta. I’m drinking watered down pedialyte hoping to stay ahead of dehydration. For the most part food has tasted okay this round... until yesterday. I don’t know that it’s anything specific setting it off though, everything just tastes vaguely bitter with some things nearly intolerable. My appetite is also nearly non existent right now, which doesn’t help with the energy.
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Hi everyone! Hoping this is finding you all having an enjoyable long weekend! Thank you for all of the lake well wishes! We ended up coming home early because the weather was going to get cold and rainy... I don’t remember who asked, but we go to Fort Peck, which is on the eastern side of the state. Whitefish and Flathead lake is almost 12 hours away from us! Montana is a very large state. Going home a day early was a bummer, but I got to spend some good time with my family and niece and nephew, and did some fishing out of our new boat. The weather was beautiful, and we made a lot of food...which tasted amazing! Indian tacos, smoked queso dip, and had a fish fry...pancakes, breakfast burritos...I was in heaven since food was tasting so good! I had blood drawn on Friday before we left, and my weight was still down...but after the lake weekend, I’m pretty sure I’ll be back up where I was before.
I checked my blood work on my patient connect and it looks ok. A few numbers have dropped below the normal parameters, but are right on the edge, and have not heard otherwise from my dr...so I’m assuming I’ll be ok to have chemo tomorrow. Since it’s a holiday today, I won’t get to start my infusion until 1:00...it may make for a long day. I’ll go get my pedicure and nails painted in the morning, have lunch, then go see my favorite nurses! I’m ready to get #4 underway. I’m not dreading it as much this time...although the side effects may have been worse, and I was more tired...I think I’m feeling better sooner this time. I had so much energy this weekend, and today! I got caught up on all laundry, cooked a chicken Alfredo casserole for dinner, and took one to a friend who just had back surgery... and made some pumpkin cream Cheese muffins for my nurses tomorrow. Fridge is clean and well stocked for chemo. I’m very glad I had a good day to get so much done, and the hubby was home to help. I truly feel ready!!!!
I hope everyone else had a great weekend, and prayers for an awesome week
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Good morning. Hope you all had a good holiday weekend.
Gearing up for #3. Does anybody else get more and more emotionally exhausted as treatment rolls on? I would think knowing I'll be 75% done after this one wouldbe motivating, but it's not. This one seems harder to anticipate somehow. And I'm needing to call the RO to get moving on what's next, but can't get myself to do it. Physically feel fine. Just exhausted mentally. Anybody else?
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I hear you, KMom, I have found it harder emotionally as treatment rolls on. Have been very teary at night this round. Lots of fears of recurrence, and a worry of an “all for naught” experience. Like, I got great news at my ultrasound, but I’m fixated on the BS saying one of my nodes looked “chunky but benign,” (but when he biopsied a node in June, he said he thought it looked benign and it was positive) and so now I’m in my head about recurrence. Also, I guess, there’s the feeling that, yes, the chemo may be the worst of it and I’m glad to start with that, but there is soooo much more that lies ahead. It’s hard not to get ahead of myself. Ordinarily I’m good at recognizing and relinquishing control over things that are best met with acceptance, but this situation requires not just acceptance but a total willingness to cede all control. Of course I accept these treatments in exchange for my life. But to have no control over these things is infuriating. And the fact that I could do every stupid thing right and it still could come back....yeah, the emotions are only getting worse right now. I hope that I will feel more even-keel after chemo is over and the roller coaster doesn’t involve quite so much motion sickness. Just want you to know you’re not alone though.
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Anna, I’m with you on fears of recurrence. Even after a recent negative Pet I find myself saying “yeah but what if it’s wrong/they didn’t wait long enough for the tracer to absorb or whatever/it’s too small to light/it got missed like on my MRI for at least a couple years” etc. I keep going back to a question I asked my MO last time about a bad feeling my tumor markers are rising, along with my ALP, which he failed to answer and reading into that that yes, they are. I know I could go get a copy of them, but not sure I want to know. I’m coming up on a year since diagnosis, and just mentally exhausted. And wondering how one faces that fear every day for the rest of one’s life.
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I'm pretty sure we all live in fear of recurrence, even those of us with a pretty good prognosis. Having a higher stage is terrifying I'm sure. I'm so sorry that it's something you, or anyone, have to live with KMom. This disease is just so scary, sneaky, and depressing. I think the only real answer is that humans are shockingly adaptable and you learn to live with a lot of things. That doesn't make it any easier though.
I am day 13 of round 2 and my exhaustion has finally eased some. Just as that backed off though I got a weird rash on the backs of my hands. It feels like my hands are sunburned with areas that hurt more, feeling almost like they are singed around the edges. Hives have also come and gone periodically. I'm sure it's a weird presentation of neuropathy. I've tried several over the counter pills and creams so far and nothing really seems to touch it. I have a call in with the symptom line and we'll see what they have to say.
Also, for anyone else struggling with hydration because water tastes gross -- I have had a lot of success with watered down advanced care pedialyte. I use 1/3 pedialyte and 2/3 cold water and it makes the pedialyte palatable. I tried drinking it straight and it was awful.0 -
So, how does this work? I started chemo July 7 of this year - is it too late to join this group? Finished up AC and started Taxol last week. But my second round got derailed by low blood counts, so I guess I'm just looking to commisserate.
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Susiemommy, as far as I’m concerned not too late, and I’m totally certain everyone else will say the same. It’s a pretty nice group! Sorry you have to be here, but welcome nonetheless.
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Melbo, sorry you’re having a rough time this go round. Gatorade is my go to on hydration. Never been a Gatorade drinker, but I absolutely crave it the week after. As for fear, I guess I could look at it as it’s not too much worse than knowing and insisting for years something was wrong (specifically on my left side)and being told it was all in my mind. At least now, i know what it is and the doctors believe me. So there’s that.....
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