July 2020 chemo club
Comments
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mtspacekace…great to hear you are doing OK! The water tasting like ashes sounds quite unpleasant. Small sips I guess would be best...kinda like watering a plant... slow is better! Take care!
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Happy 40th Birthday, Rona!
I hope you have a pleasant birthday today and wishing you well as you start your first session tomorrow.
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Thank you for your warm welcome, Iamloved, and prayers to you, too. We will support each other as we all go through this.
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mtspacekace, I hope your headache is better today.
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smichaels11, that's useful to know about the Claritin. Thank you for sharing that with us. I hope you are feeling better since your post.
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Welcome, BlusteryDay. Hope all goes well with your appointment on Friday.
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Thank you Sharon2020. Keeping festivities to a minimum, just taking it easy with the family.
Do you know what chemo you will be having?
I'll keep you all posted on how it goes tomorrow.
Stay safe and strong!
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Sharon, thank you - I am feeling better. I have zero tastebuds right now which is odd but I'm doing plenty of mouth rinsing to try and get them back!
Most of my side effects are gone, so most of what is left is all mental and emotional. My 5 year old has his last round of shots before he starts kindergarten next month coming up and I was told I had to stay away for 10 days since they are "live." I was already devastated that I'm going to miss his meet and greet with his teachers and classmates and his first day pics will include me bald with cancer but it's all very sad for me. This was was supposed to be our big year. We had a family cruise planned (cancelled due to Covid), my 30th birthday, his 5th birthday, and the start of school! I'm wallowing in self pity at the moment if you cant tell, lol.
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Hi everyone. First infusion went well yesterday and I am feeling good today. Taking the last of prednisone today and had Neulasta. Not much of an appetite but trying to eat bland foods and rinsing my mouth. I did use ice during my Taxotere infusion. Hopeful and cautiously optimistic. I am keeping a journal of each day so I can be better prepared for the next go-round. Take care all
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Sharon2020, my headache got better today, more of in a brain fog...tired, restless...food and water tastes horrible still...but forcing myself to drink and eat protein. They say day 3/4 are the worst...praying that the worst isn’t that bad!
Smichaels11...hang in there girl, you are tough!
Trynryan: I started a blog, hoping to feel well enough to journal daily there and share my info with friends and family! And will be something to look back on!
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Trynryan how did you ice during your treatment? Did you use packs or just ice?
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kukalona Happy belated birthday! 🎂 Hope you first infusion went ok
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Iamloved, For the ice, the infusion center had lab- style bags that were filled with ice and had a slot for hands and feet to slip in. Sort of hard to describe but imagine a ziplock bag with a place to slide a piece of paper! That seemed to work pretty well but got melty towards the end.
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Hi all,
So I had my first infusion today, and it went smoothly! No weird allergic responses (so far), no pain. The cold-cap was ok, I was expecting it to be mach colder and harder. I did get a bit of a headache towards the end (4 hours in total) because it sits very tightly on my head and was pressing against my scalp (which is good I think). But that went away as soon as I took it off. The hardest part was icing my hands, it was very cold and my fingers were in between hurting and numb. I took a couple of small breaks but powered through most of the time. All together not so bad.
No I'm home, still feeling ok, a bit tired but I think it's from the stress about the whole day and not because of the infusion itself.
Shauna - I hear you, My 40th birthday was not at all what I had planned (because on both covid and chemo). I'm super worried about my kids going to daycare and day camp and how that might expose me to something. My friends and I decided that anyone who didn't get to properly celebrate their 40th birthday stays 39 (or as we like to say here, thirty-ten) until all this is over.
Iamloved - thanks for the birthday wishes.
Enjoy the weekend eveyone. Stay safe.
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hi everyone! I’m back on after a run with cancer back in 2016 and I couldn’t have gotten through then without some amazing friends I made in another group here. Unfortunately, in November of 2018 I found out my cancer metastasized to my bones and liver. I took Ibrance until that failed last month. Technically I got my first chemo on June 26th. The 2nd treatment they made me skip because my bloodwork was no good. I finally had my 2nd treatment of taxol today. I’m struggling most with the steroids. I can’t get comfortable or sleep! They were supposed to cut dose in half today but unfortunately I had a bad retraction 10 min or so into the taxol that caused my heart to race, flushing, and I was seeing white spots...they had to come disconnect my taxol, push fluids, and give me more steroids! I asked for Ativan.,,that gave me 3 hours of sleep. I took a hot bath...I used essential oils to calm...I don’t know what else to try! So annoying.
Rona, i think we are friends on Twitter...I’m meredith.
All the best to all of you as we go through this.
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Fightingirl, we are here for you as you go through this.
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Was motivation and staying on task a challenge for any of you between your diagnosis and first chemo infusion? I have a lot I want to have done before Thursday's first infusion, but I am not getting any of it done. I suspect a lot of it is due to anxiety and/or unrealistic expectations.
On the plus side, I am very grateful for all that is good in my life. (I am not grateful to have cancer, but I am grateful for the excellent care I am receiving.)
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Sharon2020 Idid get my home cleaned this week (I start my chemo journey Monday with a port chemo Tuesday) I wish I had prepared some meals but didn't. I did buy a few things that might help with side effects. More thought has gone into what I will need for the actual treatment and the recovery each course. My garden produce will be ready next week so hopefully my daughter can come to help with that. In my mind I am trying to keep a positive attitude towards this chemo even though it goes against my entire being to even do it. I know the odds of it working are not that good. I am putting a lot of hope in fasting to help and my faith. I got a lot done as far as organizing during the Covid days in March and April. I am blessed to live on a lake so part of my recovery on bad days might just sitting in the sunshine with my toes in the sand!
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I am feeling much better today. I was able to take a walk and do some cleaning in my garage. I am still dealing with a terrible feeling in my mouth and mild nausea, but working through it with mouth rinses and meds. I have accepted that I'm not going to feel 100% until this is all over, and learning how to find new normal for now. This is temporary and something that has to be done to get this cancer out of my body.
I received the wig I ordered from Raquel Welchs line and oh my gosh is it wiggy looking! I sent that sucker right back and ordered a human hair wig instead. Worth the cost in my opinion as long as it looks real. My SO doesnt seem to be a fan of wigs, but I told him that going out in public looking "cancery" is not an option for me. In my opinion, when I look good I feel good. My head is starting to get itchy so I know it will soon be time to buzz it. I wish I would have cold capped, but it seems if you dont do it from the start there is no point. Womp womp. Those beautiful brave women who go out bald have all of my respect and admiration. I am just simply not emotionally capable of doing it.
Iamloved, why do you feel that chemo is not going to work for you?
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How are we feeling?! I feel like shit. Mostly stomach pains...it’s day 5? I got my first infusion on Tuesday, today is Saturday...is that how you count? It seems like everything has slowed down in my body....especially digestion! Taste buds are kind of coming back, except water still tastes like ashes. I’ve been trying to eat more smaller meals...but the stomach ache never goes away. Also. Tingly bone pain...which I’m assuming is a side effect from the Neulasta patch. Hoping that tomorrow the road is going downhill and is a bit easier.
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Iamloved, recovering while sitting by a lake with your feet in the sand sounds lovely. Also, great that your daughter will be visiting. What are you growing in your garden?
You said that you will be.fasting 48 hours before your infusions. Will you have only water?
Your comment, “The odds of it working are not great"...did you mean chemo or your comment about having a positive attitude towards chemo?
I am with you on trying to have a positive attitude towards chemo. I am working on it. That said, I also think it's ok to express anxiety, fear, disappointment, etc. My natural inclination is to get caught up with severe anxiety so I am trying to have a more balanced approach with this new challenge.
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Smichaels11, glad to read that you were feeling much better. Hopefully, the other symptoms subside soon.
Ordering wigs is hit and miss, but many wig stores and in-hospital stores that do fittings are closed due to the pandemic.
I intend to wear scarves and hats most of the time, but realized recently there may be times when I want a wig so I ordered two wigs online. One looked like a puppy on my head and the other looks like my hair.
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mtspacekace, stomach pain, bone pain, change in taste...that's rough and sounds miserable. I hope the symptoms subside soon.
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For those of you dealing with bone pain, try taking Claritin (without the D). It was on my pill regimen surrounding the Neulasta shot and made a world of a difference. It also helped with my nose running so much now that the nose hairs have left the station, lol.
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Hello, all, so happy to have found you (not that I wish to find anyone in the circumstances we’ve found ourselves—you know what I mean!).
I was diagnosed stage 1a by my BS in mid June, but after MRI and resulting lymph node biopsy coming back positive, that was changed to 1b, which BS actually seemed to be hoping for bc he really prefers neoadjuvant to adjuvant. I don’t like knowing there’s stuff in my nodes, but I am glad I qualify for neoadjuvant.
I’m meeting my MO on Tuesday, and I will get a port placed on Friday (7/17). I’ve been led to believe chemo (TCHP regimen) will begin the following week. Things have moved a bit more slowly due to Covid, which is frustrating and worrying, but of course I do understand.
I am 37, and my daughter will turn 5 the week chemo begins. My son will turn 1 the first week of August. SO has been great about taking off time so he can be with kids while I go to all these appointments. We are fortunate that he is able to take intermittent FMLA.
My dad died of pancreatic cancer in 2018, and my mom had a battle with uterine and breast cancers back in 2013, but she is cancer-free today. I did genetic testing and was negative for everything, so I’m glad to be a candidate for less surgery, and of course very relieved by the genetic implications for my kids.
I have my sister, husband, and friends at work to lean on, but my mother is in the midst of a move from my childhood home to a lifecare community (independent living, with options for stepped-up care as she ages), which is causing her really extreme anxiety, and she has also been showing some signs of cognitive impairment, so I haven’t told her any of this, which is stressful.
I’m finding myself obsessed with the damn statistics about BC’s propensity to return even decades later. I know I’m borrowing trouble, and I know once I’m actually in treatment, I’ll be forced to focus more on the day in front of me, but I guess when you find yourself with a 1/1000 diagnosis, you can’t help but assume you’ll also be in the 6% who have a recurrence within 5 years and the 30% who have a recurrence in 20 years and all that. And all the minutia of this and that, like how triple positive is less likely to achieve pCR. I have to remind myself—I’m a English teacher! I am not qualified to make objective use of scientific studies!
I do have a tendency to perseverate...
Wishing you all well. I’m so grateful to read of your bravery and perseverance and loving care for yourselves and for others. Thanks for having me.
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Annathebrave...
Me too girl. I am 38, no family history, and also did genetic testing...which shows nothing abnormal as of yet. I figure if I’m lucky enough to be 1/1000...I will probably be the lucky one to be in that 6% as well. Which I know I can’t dwell on...I need to stay positive in this journey and take things one day at a time. God wil not give us more than we can handle.
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Hi. I started the same treatment regimen as you also on July 1. We’ll have to compare notes. You are so young to be going thru this. I am an ancient 65 but very healthy for my age until this hit. No prescription meds other than the biodentical hormones I was on.
So far I’ve had minimal side effects. Slight Constipation, slight diarrhea, and of course tired.
I didn’t have the Neulasta shot my first go round and at 7 days my WBC was below normal but not dangerous. Came down with a rash on my face day 7 which started going away on day 9. I’m assuming when my WBC started increasing again. Then after feeling really good I come down with a low grade fever on day 9 which I still have. I’m reading that is common with Herceptin but I’ll give them a call tomorrow to make sure.Hope all is going well for you.
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I iced on my first treatment also. Had gel pads and baggies with ice. We changed out half way thru. The baggies did leak so I will double bag next time.
How this helps with both the neuropathy and the nails. We’ll see.
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I read that keeping your nails painted dark during chemo can help keep them healthy. Not sure if there is real science behind it or not, but I'm trying it anyway lol.
I have what is either a rash or acne all over the back of my neck and my nose and chin. Its driving me nuts and I feel 15 all over again, lol. I hope the onco nurse can prescribe me something tomorrow when I call.
The hairloss is what is weighing on me most. My sister in law will be shaving hers with me next Sunday. A big part of my identity is my hair (it's always been very long and healthy) so I am trying to get over not making the decision to cold cap. I just have to accept I'm going to look sick for a while. Thankfully my SO doesnt seem to be fazed by it at all. Thank god for good men.
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Smichaels11… I guess I should have stated that differently. It may work but there is a 40% chance it won't according to the MO I "fired" (Another story) I feel like chemo is using a nuclear bomb to kill a mouse in the house. So much Collateral damage. But I will give it a try. And thx for the tip on Claritin! How are you feeling today?
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