July 2020 chemo club
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Good evening ladies. I am looking for a way to thank my friend who has been taking me to my treatments. She liges 5 hours from my Breast center so it is quite a trip for her. I just really want to show her how much I appreciate her being with me. She is my best friend and I know she would not want a thing for her troubles. I failed to post our nat picture from September 17. She is a fun loving gal who loves golf like me. If you have any ideas let's hear them. I am open to anything. I hope everyone is getting thru their treatments. I am counting the weeks to being DONE with chemo and its side effects. Hoping to feel better for Thanksgiving 🦃🥧🍷
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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
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AnnaTheBrave... great idea!! Plus will give me something to plan and look forward too. Speaking of Netflix binge watching what is everyone's recommendation? I binged Downton Abby during my first 2 rounds. Now I can't see to get hooked on anything. Will take any ideas. Prayers for you AnnaTheBrave as you head into the homestretch of treatments. Praying for very few side effects!🤗
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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.
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KMom57...There are times when I realize I am fighting for my life and not just "sick". I cry a lot at night in bed before hubby comes to bed. I literally sob. I can't place why for sure but I think these drugs mess with our emotions more than we are told. I had #4 a week ago and I have been dwelling on the fact I have to go through this for 8 more weeks. I too try not to complain too much about my side effects or I diminish the toll this is taking on my body as no big deal. Why? I do not know...so people don't feel sorry for me? It is very scary to go thru this. People are caring but if they have never been thru it they cannot relate. Hang in there, use this sight to vent if you need and know you are never alone. I don't know if you are a spiritual gal but even meditations on YouTube can be comforting. Need to take my own advice!! Hugs to you this night!🤗🤗🤗🤗🤗
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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
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Nottodaycancer2020...An extra prayer for you today. You have had a plateful in your young life. My sympathy on the loss of your children. Yes I am blessed with an incredible friend. My hubby works in agriculture and this is the busy season. So with the 2.5 hour drive one way 4 to 5 hour appointment, it is great to have her company. And your are so spot on with the tip toeing around. I feel it at work and with my boss who has asked me one time since my dx how I am doing. I guess those of us with this disease just know how to dig deeper to find the strength to get through each day. Perhaps I should consider that a gift from above.😁 I hope your side effects are minimal this round and that the meds do their job...wipe out the cancer cells not you! Hugs to you🤗
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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.0 -
KMom, I feel you. I would encourage you to check in with any wellness support your hospital or infusion center might offer. They likely have social workers and psychologists who specialize in caring for people living with cancer, and it can be great to talk to someone impartial, so you can complain about anyone and anything without having to censor yourself or worrying what you say will scare the person your talking to or get back to someone else. I have an appointment next week with my cancer center’s psychiatrist. What better time to start therapy than when I’ve already reached my out-of-pocket max! Another thought—self care is important. I don’t know if you are the type to stress about perfection, but remember that, sure, it’s great to eat well if and when you can, but don’t criticize yourself about your choices, and also eat for pleasure. If you want pie, enjoy that pie. If you live in an area where you can get a massage, mask up and make the first appointment of the day and enjoy the time to relax. If you have a good midwife or GYN, or if your MO has ideas, you might also ask for resources and non-estrogen-containing supplements that could help balance your hormones a bit, if some of the emotions are related to chemo-induced menopause. The only way out is through, and you are in it right now, but you will someday be through, and crying won't slow you down.
Iamloved, I am planning a two-week trip to a lake in Maine next August, to replace the one-week trip we had to cancel this past summer. So good to have something to look forward to! I hope a golf weekend (or more!) works out for you! I do recommend travel insurance for peace of mind. Also, if you liked Downton, you might like The Crown on Netflix. Same vibe. I think The Crown is kind of boring, but I mean that in a really good way! It’s soothing and pretty to look at and not stressful. It’s like the adult coloring book of television. If you want quirky hilarity, I love Arrested Development and, for a more heartfelt option, The Good Place. Also, a throwback—Golden Girls is on Hulu, and it totally holds up! I’ll see if I can think of any othe Downtonesque dramas that aren’t too heavy and let you know if I come up with anything!
NotToday, thinking of you—please let us know if your doctor has any wisdom to share about your labs. My iron levels all came back normal, which is good but also a bummer bc I think it means I just have to hope my body will rally on its own. Anxious they’ll keep dropping. I see my onco in a week.
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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.
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Iamloved, Anna, Melbo, Nottoday, thank you. It helps knowing there are people out there.
Nottoday, hope #4 is going well. Thinking of you today.
Melbo, yes I have a couple of friends I could possibly open up to. One in particular...odd that we weren’t really super friends before my diagnosis, more an acquaintance, but when she found out, she didn’t say “can I do anything.” She is a strong, independent woman like me, so maybe she knew asking for help would be hard. Anyway, Instead she said, “You can’t go out during covid and treatment. So on Fridays, I’m running your errands with mine. I’m texting you on Thursdays and insisting you give me something to do on Friday.” Taught me something about how to offer help specifically. I have a couple of great friends like that. But most are so busy trying to navigate virtual school and Covid, I hate to dump my issues on them too.
Anna, yes I’m a perfectionist type, but I’m letting myself eat whatever sounds good regardless how healthy or not. I figure I’ll handle the diet aspect of this when I’m finished with chemo. But the counseling idea is a good one. This is a lot to handle emotionally for all of us in it. And I love your “the only way out is through.” My daughter and I always say the same thing about anything difficult but necessary.
Thanks again to all of you for the support. I made calls this morning to get things scheduled moving forward. One infusion left next week. Rad consult scheduled for next week. Forward I suppose. Not much other choice, eh?
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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.
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A few of us have mentioned a metallic taste in the mouth caused by the chemo. Is anyone else experiencing a chemical or medicinal smell soon after the infusion starts and the smell does not go away with showers, changing clothes or brushing teeth? I noticed it lingers for a couple days after the infusions, but does not last as long as the metallic taste. It happens so soon after the infusion starts that I think it may be a sensory reaction and not something other people can actually smell. With masks and social distancing, I HOPE no one else can smell it. I don't want to be smelling like an industrial company! 🤣
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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.
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KMom57...the way your friend stepped up by just doing instead of asking is a routine I need to put into practice. How beautiful! Sometimes we find the best friends in the least likely people. My coworker has stepped up big time for me at work. She does it all so cheerfully. Another life lesson for me. It is hard for me to ask for help even with my own children. Pride can be a terrible thing. I need to learn to be humble and just admit I need help. And then be thankful!!!
Shar2020...I never made the connection between dexamethasone and feeling depressed. I am gonna have to pay attention next treatment. I did meet one time with a therapist during my infusion. She offered some basic advice for dealing with felling depressed. I am just to sleepy during the infusions to be talking to anyone!😴😴😴
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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.
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Trynryan, I do not have a port, but my regimen isn't the same as yours so not sure my experience is relevant. That said, we have no problems finding a vein for IV, but I do now have three tender lumps on my arm where the three infusions have gone in. I'm told the drugs irritate the veins (they called it phlebitis), and that they will likely get better with time, though I should think “months" instead of days/weeks. It's only really been a problem when I needed a BP taken into my wrist area, and could not because one arm had the vein issue, and the other is compromised by ALND. Also is uncomfortable when I accidentally bump my arm, so I tend to guard it. I'm hoping it will go away. I was assured by my infusion nurse that it will.
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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...
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Trynryan- I'm in the August group, but popped in here to see how all of you who are ahead of me on the TCHP regimen are getting along. I've had two out of six infusions of TCHP and I'm scheduled to finish out a year with HP. There has never been any mention even of putting a port in for me. I've wondered why it seems I'm the only one with no port, but I've seen a lot of complaints about it being uncomfortable and I've had no trouble with the vein in my arm.
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kmom57 and positivelyhalffull thanks for sharing your experiences with no port! Definitely makes me feel better!
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Hi everyone! I finished my 4th AC and now will start the first of my 12 weekly Taxol tomorrow. I'm a bit nervous something will go wrong, but hopeful it goes smoothly. Anyone else on here doing weekly taxol? I'll finish on 12/14 assuming all goes to plan.
Iamloved - What a wonderful friend! I think Anna gave great ideas for way to thank her!
I know there has been some discussion about how some people don't know how to respond. I have found some friends have been much more evasive than I would have expected. On the flip side, there are a couple girls who were really just acquaintances before this who have reached out to me quite a bit. I don't hold anything against the girls who don't know how to react, but also really look forward to these new friendships too.
Have a great week everyone!
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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:).
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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!
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Good morning all. Sitting waiting on the doctor for a radiation consult. I was out in the waiting room and it suddenly struck me, how the heck did I end up here? This was so not the vision i had of my life at this point. I looked around and thought, nobody in here knows how the heck they got here, or ever dreamed this for themselves. Cancer sucks. It just really does.
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I’m supposed to have TCHP #5 tomorrow...hoping that all is well, but it’s about time for a hiccup. My rbc were lower again, my potassium is still low (although I did forget to take it the day before my blood test) and, I hope I’m being a hypochondriac, but I saw my nephew on Wednesday and he came down with a runny nose Thursday. Now I feel like my nose has been runny (which it has been because of chemo side effects I feel like) my throat is kind of sore tonight, I sneezed... and coughed... I hope I’m just freaking out. I want to get a good nights sleep and hopefully wake up in the morning feeling 100%...but the steroids Jack me up. On the positive side, I have not had a fever. And it’s been extremely windy, dusty, and smoke in the air the past few weeks. Maybe it’s allergies and side effects? Fingers crossed.
I hope everyone else had a fabulous weekend! And prayers everyone is smooth sailing this week
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mtspacekace...My prayer today is for you to make your labs! It is such a stressful process. My throat has been sore the last 2 treatments on and off. Sunday I had the chills with the sore throat and headache so I took my temp. 98.6. I feel the last 3 months have been nothing worrying about something. How is the body to heal when the mind is in a constant state of worries and doubts? My big D came back Sunday too and is still here this morning. My oncologist told me it is rare to have diarrhea with just the TC. Well as usual I am the anomaly! My constant worry because of the big D is permanent damage to my digestive track. I hope and pray you #5 get done today and you have smooth sailing to the finish of #6. Keep us posted!🤗
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mtspacekac, thinking of you today.
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#5 done with flying colors! My labs weren’t low enough to postpone and no talk of a blood transfer. It went very well today, the premed I had to take made me jittery again, but less than last time. I was able to take a nice 4 hour nap when I got home. Getting ready to eat some garlic chicken with pasta and veggies...trying to get a lot of nutrients while I still feel good enough to eat. I’m going to try taking my nausea meds differently than what the first nurse told me...she didn’t seem to know, and it was her last day. I did some googling and alternating the 2 meds every 3 hours seems like it may work better. I’ll start that in the morning. Fingers crossed I don’t go down the lose 10 pounds in 5 days hole like usual...but it hasn’t been any different any other time, at least I know to expect it’s gotten worse each round, and only have to get through these last 2!!!
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mtspacekace 👏👏👏👏👏 So glad to hear you got your treatment and are that much closer to the end!
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Yay, MtSpaceKace! Yay to everyone! Just wanted to put in a plug for finding and seeking out your kind of self care—I had an appointment (via phone) with my infusion center's psychologist yesterday and spent a nice hour crying and venting about everyone and everything, in a way I haven't been able to thus far, and I have to say I feel a lot better today, physically and emotionally. Ordinarily, Day 7 is one of my crappiest days, but I feel pretty good and I think a lot of it has to do with purging these emotions. I have a very hard time being vulnerable or showing what I considerflaws, so finding someone who gets paid to listen to me works better for me than talking to friends and family, and I want to recommend the same to others if it may help you.
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