July 2020 chemo club

Iamloved -- this disease is awful. It absolutely has to be treated or it will kill us, but the treatment is so awful that it also could kill us. I'm sorry you had such a tough time with it that you had to stop some of the medicines -- but it sounds like it was the only call to make and your MO is clearly looking out for you. Still sucks though.

Last night I slept terribly - I'm assuming because of the steroids. I got about 4 hours total, despite taking benadryl for my allergic reaction, and later motrin PM for something that felt like restless leg syndrome. I suppose it doesn't matter that much since I will be sleeping non-stop soon enough.

It's day 5 of my 3rd cycle and I feel surprisingly good. I don't have diarrhea and I haven't had to nap yet during this cycle. Today I even felt good enough to tackle making babka since I wanted a project to work on. We shall see how it turns out. I'm not sure why I feel okay, but I will take it while I can get it. I hope everyone else is continuing to do well with your treatments.

Melbo, glad to hear you are doing well this cycle.

I had my first PT session yesterday, trying to get rid of cording and get my ROM back before I start rads. Of all the treatment related things I’ve done so far, it was the most pleasant. I hate people touching my numb areas, feels creepy, but it wasn’t bad really. And I felt hopeful after. Surgeon tells me my ROM is really not bad, better than many at this point, but that’s small comfort when I try to reach for things and feel that pull, and the tightness and heaviness that’s present literally all the time. I keep thinking I’ll get used to it, but I’m not sure I will. I tell myself though if this is the worst that comes from this, I’m doing ok.

Hope everyone else is doing well this week.

Iamloved, what a wonderful friendship! What about planning a trip together once your treatments end and the world is more normal? Like a golf weekend somewhere beautiful next summer? If paying for both of you is out of reach financially, maybe she would want to pay for herself and you could take her out for a nice dinner or pay the greens fees or something. And of course a beautiful, heartfelt letter of thanks is perfect too! There are tons of beautiful pieces of art celebrating friendship and sisterhood on Etsy, and perhaps a little something like that along with a letter would be the right way to show your gratitude.

Shar2020, thinking of you today. Hope your treatment is off to a good start!

I’m having #4 right now and things are off to a slow start. My RBC numbers were low (RBC: 2.81, hematocrit: 26.7, hemoglobin: 9.4) so that explains why I’ve been so tired and so easily winded and why my muscles hurt. ALT (liver) was up to 55, so they are watching that too but not concerned. It took a while for the infusion team to check my blood numbers with my doctor, but thankfully there was no cause for a delay or any dose reductions. Just have to keep on keeping in. They are going to test my iron to see if they want to give me an iron infusion. I was worried they were talking about a blood transfusion, which makes me nervous, but no, just an IV bag of iron.

Thinking of you all! May you find quiet spaces to rest, binge-able shows on Netflix, helpful friends and family to feed you, and energy enough for the things you most enjoy

Is anybody else really struggling emotionally? I’m on the verge of tears all the time. #4 is coming up and you’d think I’d be happy to be nearing the end, but I just feel scared and weepy and angry. Not just scared of the infusion but everything after I think. This whole thing. Feels like my family is tired of me, and my issues too, and I feel alone. I don’t complain to them, so it’s not that I’ve worn out my welcome with them. Exact opposite. I pretty much keep my bad days to myself, and take care of my daughter myself. I don’t know, maybe my imagination. I just feel alone and scared. And the closer I get to the end of chemo the more alone I feel.

iamloved-what a great photo! I am so jealous you get to bring friends along. I live in Arizona and we still can’t bring anyone in the office.

Anna the brave-glad it’s going well. I’m anxious to see the doctor Tomorrow. I got my labs back and I’m a little nervous. My red blood count is low also at 3.4...I’m also still having issues with elevated liver enzymes.

Kmom-hugs💗. I have been emotional also and pretty much cry when I really think about my diagnosis. It’s sucks. It’s hard for me to reach out on my bad days and like to process on my own. What I have found out previously after I lost my twin sons right after birth is that during these traumatic life moments we often end up having to teach our family how to handle and deal with everything. I believe going through breast cancer is the same in that way. They may often tip toe around everything and may leave us feeling alone. Hugs 🤗

It’s the day before chemo for me and it’s always a bit somber for me. I’m still trying to eat and enjoy everything that still tastes good and also dreading all of the side effects that will be coming. It’s infusion #4 for me tomorrow

I’ve found that a lot of people just don’t know what to say or how to react to the cancer news. Even people who should be close to you aren’t sure what you need or how to make you feel better. I am a bit of an over sharer myself — so I started a caring bridge blog to update people on how I am doing. It helps people stay informed and connected to me and to understand a little bit of what I’m going through. I also update frequently on Facebook and when I’ve skipped a day or two people will mention it to my husband, just trying to check in to see how I’m doing. I know the idea of blogging seems icky to a lot of people, but so many people just have no idea what the experience is like and I want to try to educate them some, and help them help me when I’m feeling down.

kmom is there anyone in your personal circle you can open up a bit to? My experience is that if you put on a brave face people will respect that you are trying to stay strong and will react accordingly. But we all need safe places to vent and cry and rage against the situation.

hello everyone-just sitting one the chemo room waiting to get started. My doctor was not concerned about my labs and said I’m doing good for where I am at. She said they will wait a week if my WBC gets below 2.0.

Iamloved- thank you💗 it’s been a roller coaster through some tough and amazing years. My twins were born in 2013. After the loss of them I have since been blessed with two more children. I thought going through that was enough pain to last a lifetime and then I got hit with this diagnosis.

Nottoday, I hope your fourth infusion is going well today. My sincerest condolences to you on the painful loss of your twin boys at birth.

KMom57, I am glad you have a caring and supportive friend to run errands for you every week. I will echo what others have said re: getting additional professional resources for emotional support. In addition to the frightening diagnosis of breast cancer, treatments and surgery, the medications can wreck havoc on our mental health. After the dexamethasone wears off, I crash into dark, depressive episodes of despair. I just checked online and Gilda's Club offers many cancer support services in the U.S. and throughout Canada. For anyone in Canada, Wellspring has moved all their support groups online and there is a large selection of programs.

Iamloved, another awesome picture. She is a loyal and devoted friend! My suggestion would be an outing or event you can both enjoy together.

AnnaTheBrave, your fourth infusion is over! Yay! Sorry to read it got off to a slow start. Mine did, too, yesterday. About 10-15 minutes into the Herceptin infusion, I became sick so they paused it for half an hour and then continued it at a slower rate which was better. My first three infusions were uneventful from start to finish so that was unexpected. I hope all goes well for you in the weeks ahead.

Wishing everyone a comfortable weekend with minimal, or no, side effects.

I have noticed a persistent unpleasant chemical smell which I thought was coming from my hair, or fromthe unscented shampoo the cold cap forces me to use, but perhaps not. Don't know what it is, But yes, I often get a whiff of something chemical that showering does not eliminate. Mine, however, doesn’t seem to go away between infusions. I frequently randomly can smell it just briefly.

Hello all! I have not posted in a while. The day before my 4th infusion I started antibiotics because my oncologist did not like the look of my port. About a week after stopping the antibiotics I noticed the last few days some irritation and a small opening from the last chemo that never totally healed up. Today I had an appointment with the surgical team to evaluate it, and to my surprise they said it was an infection risk and needed to come out TODAY! I had the procedure this afternoon and unfortunately a new port cannot go in until this is totally healed and there is no risk of infection. That means my last two chemo infusions will have to be done through my arm vein. Not looking forward to that. Anyone on this site not have a port for chemo? I will have to decide if it is worth it to put a new port in as I will need to have Herceptin for a year.
I thought my side effects after #4 were pretty manageable... just really noticing fatigue. My hemoglobin is dropping about one gram every three weeks. Even with all of this I am feeling hopeful that the end is in sight. (This part any way).

Virtual hugs for all of you hurting, tired and weary.

I forgot to add- after I saw my oncologist before chemo today we had a discussion about getting a hysterectomy. My Gyno brought it up since I had a genetic abnormality for check2 which is what started my cancer. I am at risk for other cancers as well. I was told I have an increased risk of 15% more than general population of 3-5% To develop ovarian cancer. I feel like my leaning of going through with it but I am still so young and hate that I have to make these decisions. I always thought I was done having kids but loved keeping the idea open. I dunno just venting...

kmom57 and positivelyhalffull thanks for sharing your experiences with no port! Definitely makes me feel better!

I had the exact same thing happen!! Had #4 without a port and it went great! Will do 5 and 6 the same. Deciding if I want to get one for the next year.

Do not worry about the chemo with out the port:).

Hi, all, hope everyone is having a decent morning. NotToday, I wanted to circle back to your thoughts about hysterectomy. I would just suggest that there’s maybe not a rush, and that waiting a year or two (or perhaps longer) before having a hysterectomy wouldn’t impact your health. I think there’s a great deal of power that comes from closing doors yourself rather than having them closed for you during the heat and drama of active treatment. You will receive additional monitoring regardless of the steps you take and the timeline you choose, so you should go at your pace with a supportive doctor. It sounds like you have all that in place—just wanted to add my two cents and encourage you to make decisions when you are ready to make them.

I am waiting for a call back from the triage line to try to understand exactly how crappy I should feel before I worry about the anemia they detected before my last infusion. I’m so exhausted by the anxiety and uncertainty of everything. Is my heart beating fast bc my hemoglobin is low or because I’m anxious? Is it beating too fast? Exactly how out-of-breath is acceptable after walking up one flight of stairs? I wish I didn’t even know that my RBC numbers were low! I know they wouldn’t have given me the chemo if it looked risky, but I’m so in my head about trying to figure out what’s chemo, what’s anemia, and what’s anxiety! I see my MO on Friday..It’s going to be a long week!