July 2020 chemo club

Nottodaycancer2020

melbo-my 2nd infusion has far less severe side effects than the first. I’m not sure if everyone has looked for the loading dose of the first round But it had significantly higher dosing medications than the rest. I’m hoping that first round was the worst in terms of recovery. I was down for more than a week. The 2nd round I started feeling better within a couple days but dealt with symptoms on and off for a week. I’m on that sweet spot between cycles where all of my side effects are gone and I’m already counting down til next Friday (my 3rd cycle) . I feel like I like to indulge in the things I love to eat while it tastes normal before my taste goes again. Anyone else do that also?

KMom57

Yes I do that too. I actually am letting myself eat whatever sounds good as a general rule. I figure if ever my body ought to get to be indulged and getwhat it wants, it’s now. I’ll get back to my healthier diet when I’m done.

kimintx

Happy Friday! I was able to have my infusions yesterday because Houston area did not even get rain. I also had an office visit with my doctor and she informed me that my liver enzymes were all back to normal levels which means the chemo is working my liver too. That was some good news. I had another slight reaction to Taxol even after steroids. So, they made it were the drip was for 2 hours instead of 1 to go into my body slower. It did work. But, she said they are switching me from Taxol to some other taxol that has a protein base, it starts with the letter A but I can not remember the exact name. I hate changing up anything when I know something is workiing but I suppose they know what they are doing.

Prayers for all! Have a good weekend.

Melbo

Nottoday — I asked during my infusion if my first infusion was front loaded. The nurse compared the numbers and she said the only medication that was front loaded was the Perjeta, everything else was the same between the two treatments.

The infusion itself went fine. My lab work was all good, they accessed my port with no issues, and the only side effect was some temporary mild tingling in my pinky fingers during the Perjeta and Herceptin infusions. The big difference so far is that after the first infusion I was hyped up and wired from the steroids. This time I’m tired, cranky, and my stomach has already started cramping.

One of the other things I have been experiencing has been periods of time where I have been freezing cold but don’t have a fever. I have experienced it around my house off and on for the last couple of weeks, and I was freezing during the infusions today. The type of cold where you can feel it in your blood and bones as it radiates out to your skin. I mentioned it to the oncologist and he wasn’t sure what could be causing it. He said maybe because the chemo medications were affecting my hormones, but if that was the case he would think I would get hot flashes, not freezing flashes. Any one else experience this or know someone who has?

Iamloved

Good afternoon everyone. I had my 3rd infusion on Thursday. Everything went well. I took 2 good friends with me who tag teamed being with me in my Room. I am feeling a bit more fatigued on day 3. I agree with the eating whatever tastes good. I did get through again with my fasting. I'm happy I'm able to do that so when I'm done with this chemo I can get back to my intermittent fasting schedule. And my crazy friends brought these hats for us to wear at the center during the treatment. We were "Fishing for the cure" It sure made for a fun day and tons of comments from the staff! Anything to lighten the mood my friends said!

KMom57

How fun iamloved, what great hats! And what great friends. It’s obvious your username fits.

brittonkb

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!

Shar2020

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.

KMom57

Brittokb Thinking of you today.

Iamloved

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.🙏🤗❤

mtspacekace

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

mtspacekace

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.

Melbo

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

Melbo

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

Shar2020

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.

AnnaTheBrave

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.

brittonkb

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!!

Shar2020

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.

AnnaTheBrave

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!

mtspacekace

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!!!

Melbo

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.

Iamloved

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.

KMom57

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!

Shar2020

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!

AnnaTheBrave

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.

brittonkb

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!

Melbo

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.

mtspacekace

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

KMom57

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?

AnnaTheBrave

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.