Starting Chemo May 2019
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Thanks Pat! I bought the book Life Over Cancer that santabarbarian recommended. Admittedly, I haven't read it yet. I'll share, too.
My treatment went well today. I will probably have a red face tomorrow and Sunday. I'm guessing Sunday will be my not so great day, like last time. Who knows, though. As soon as I think I have a handle on things, I feel like I'm presented with an obstacle. For now, though, I feel fine.
Mpv459, as far as tips go, here's what seems to work for me. I journal about my feelings and symptoms. I take that to all of my appointments. I take the ginger capsules that my MO suggested twice a day. I take Claritin every day. I take my anti nausea med as prescribed after treatment and the following two days whether I am nauseous or not. I drink 2 liters of water every day, but my goal is 3 liters. I have a folder that I take to all of my appointments, even for other doctors, that I keep my lab results, medication list and imaging reports in. I have a larger, divided filing folder that I keep my medical receipts and other BC related papers in. When I feel well, I go to the gym. Even if I only walk on the treadmill for 15 minutes, I feel better afterwards. My body temp is low, stupid SE, so I'm cold. I wear a hoodie, hat and winter socks around the house. I'm bringing sexy back. If I think of more, I'll let you know. Feel free to pm me with questions.
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Hi all. Reporting in about my 1st infusion today. I'm to do a TC (taxotere/cytoxan) regimen, 4 cycles 3 weeks apart.
First I had a blood draw for lab tests. I had CBC and a liver enzyme test, something else. Everything reported within range. After blood draw, I met the RO for the first time. She talked through the process, drew pictures of how the radiation is aimed, talked about SE. After chemo is over, I'll start 20 radiation treatments.
After the RO, I went back to the infusion clinic. Got settled in there, had 3 steroid pills by mouth and was started on an IV on something for nausea. About 40 minutes later the pharmacist came to verify the drugs they had for me and to talk through SE with me.
While the pharmacist was there, the nurse began the taxotere infusion at a slow speed. Got a few milliliters into it and I reacted, flushed and got hot. They stopped the infusion right away, more nurses showed up like magic fairies. They started pumping benadryl in me. Between the drugs and the reaction, I was a bit dizzy, slightly nauseous. That calmed pretty quickly in real time, but it seemed like a long time to me.
I had to pee (boy did I, and I think in less than 5 hours at the hospital, I went about 6 times. TMI!) So they got me up and carted me to the bathroom. After that and another 20 minutes or so, they started the infusion again. The pharmacist assured my husband that reacting a second time would be very rare, no reason to expect that would happen. But it did. I got very hot again, felt bad.
They stopped the infusion the second time. Contacted my MO. So far I'd only had about 20 ml of 250 in the bag.
The MO said to stop and send me home. I'll meet with him on Tuesday and might be scheduled to do my FIRST infusion next Friday. Yeah, have to start over.
I had a big nap this afternoon. The benadryl wiped me out and I feel very dull and druggy now. It's amazing I was capable of writing this!!
Besides being terribly dull, I'm also disappointed and a bit down. It took a lot to gear up for doing this first one today. My daughter would say it was crap on a crap cracker. Yeah. That.
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hi everyone. I’m writing from the hospital. Those of you who got the Neulasta patch count yourselves lucky. I guess my oncologist thought I was young and healthy and didn’t need it. I did. I ended up with that thrush and a few days later developed fever. On second day of fever it reached the 100.5 level and I went for bloodwork. I had very low wbc (1) and had to be admitted to hospital. I’m going to be here for a few days too. Good news is I feel much better but still very low wbc so they are going to give me the Neulasta. Some that have it...fyi that is the cause of some of your aches of bones, etc. The hospital oncologist said that is a common se. Not looking forward to that, but really want to get out of here too. Mother’s Day in the hospital UGH!
As I read through all of your posts, I see we are all getting down a bit. I am too. Right there with you ladies. I thought I had this and F this cancer and I will go on with my life and just power through. Not working out that way. I need to slow down and take one survivor’s advise to me, take it one day at a time.
I am really really glad I found this group. Hoping what I write about can help someone else a few weeks behind me is a comfort.
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Martha, hugs for you, and I wish you a happy mother's day wherever you are. Your comment posted just about when mine did. My day was crap, too. Now I need to work hard to reframe it and have a better attitude again. blech!
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Oh no! How terrifying MountainMia and MarthaMW. Please know that you are in my thoughts, as is everyone else who's experiencing SE. Actually, I think of everyone on here.
We're strong. We can do this. Yes, it sucks. I'm here for you all if you need to pm me.
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MarthaMW, I still had a WBC of 1.3 despite being on Neulasta. I was shocked!I thought Neulasta would prevent me from having a low WBC. I received Neulasta again today. I see my MO in a week. I requested that I actually see him since I saw the NP last week. The NP wasn't as thorough as I had hoped for.
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How could I forget to tell you all. My hair is beginning to shed from my head and other various parts of my body. No actual bald spots yet. I'm debating on having my daughter shave it again, this time without a guard. I'm trying to handle this with grace and dignity, but must admit that I am sad.
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HappyAnyway: "I'm trying to handle this with grace and dignity, but must admit that I am sad." Yeah. I know.
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Hello all~
Had my first infusion on Wed and have felt ok up to today. No bone aches, just cruddy. Still went for my two mile walk and making sure I am getting enough water. What is the deal with food not tasting or sounding good? I have NEVER had this problem lol!
Is anyone else worried if the Chemo is working. Big Bertha started off at biopsy at 2.6 and then the MRI had it over 7 well in total. The main tumor was at 5cm and then 3 smaller ones are in the same duct. Just crazy!! My score for growth rate is 70%. Yikes! Hoping the faster it grows the faster the chemo will stop it.
Continuing to think about you all and the warriors we have become!
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Today I wore the wrong things for chemo and wasn't as comfortable as I might have been. I had on sweatpants that were basically soft and comfy, but the waistband is wide and actually sits at the waist. They felt a bit too constricting.
Also I had on a soft, short-sleeved shirt, which was fine, and a fleece Columbia jacket. The jacket was okay in some regards but not great in others. The 2 big problems with it were the elastic at the bottom of the sleeves. While I could push the sleeve up over my elbow, that made the elastic rather snug. And I was stuck with it on, as of course I couldn't take the jacket off once I was hooked up for infusion.
I said something out loud about having worn the wrong things, and my husband said next time I should wear a cape. He was joking, actually talking about a super-hero type cape. WE ARE SUPER HEROES. But it got me thinking that a cape would really be better. Not an ugly hospital cape, but something warm and soft in a great color. It should open at the front so it can pull off without going over the head. It should be short enough that it doesn't get in the way for using the toilet.
Polar fleece is easy to work with and comes in 58-60" width, with I think would be just right. I'm making a plan for this. If it works out, I'll share photos and directions for anyone interested.
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oh Martha, I’m so sorry to hear ur in the hospital and that ur Oncologist thought u would be fine without the neulasta!! Makes me so upset that he’s just guessing that ur healthy enough not to have it. Same toxin goes in u as everyone and it’s common SE GRRR I truly hope u are doing at least a little better!! My heart goes out to u.
I keep reading neulasta patch.. I was never offered this, or maybe not available in Canada I just get the shot 24 hours after chemo.
Happyanyway, seems u have ur stuff together perfectly I’m a mess over here with paperwork and forms and notes all over lol glad u are doing ok too. Minus the hair thing of course.
Also wanted to thank everyone for the well wishes and hoping first chemo sessions go good for all!!
G1973, my beast too kept managing to get bigger with every scan. Started 1.9 then 2.3 then a whopping 5+cm at surgery and additional 2.9 made my head spin for sure. I had surgery first cause we all thought it was small. She got what she could but left some behind. So chemo was second, then more surgery then radiation sure is a ride!!
Mountain Mia, I’m excited about this cape!!! Hope to see photos once ur creative mind puts those wheels in motion!!
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MountainMia - I know you are disappointed with the reaction and I am sure anxious about trying it again. They say it is fairly common (doesn’t feel like it I know) so hope they have a plan for you with a special combo of pre meds that will work next time. I also love your cape idea. I had my zip up hoodie with me but just put one arm in and had it draped over the other shoulder. A fleece cape would be nice and I’m going to tell my mom about that.
In 2014 my mom moved to where we live and into a small retirement condo community. She has always been talented with needlework (sewing, crochet, knitting, anything really). To help her meet people we started a “group” that they later called the Village Needlers (the unofficial name is “stitch and bitch” lol). One of the members had been through breast cancer and chemo and she suggested they start making blankets for the patients doing chemo. They use fleece (so mom is always looking for fleece on sale) and have this tool that makes holes along the edge and they crochet a border around it. They have solids and prints for men and women. They have made 100’s of blankets for the patients over the years. I will tell her about your idea of making a cape. That would be a nice change on things.
Hang in there ladies. One Day at a Time
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MarthaMW, I woke up thinking of you. How are you feeling this morning? Are you you happy with the hospital staff?
Your mom sounds like an amazing woman. You are, too.
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Martha, I second HappyAnyway's comment!!
If you tell your mom about this, tell her I'm thinking of using a piece that's width-of-fabric (about 60") by about 40", because I'm short. Men or taller women might want something a little longer. I plan to round all the corners and cut a slit on one side to the center. I'll probably also round out the center, to create a neck space. I want some way to close it at the neck so it doesn't slide off if I have to get up for the toilet. (And even with my shortened session yesterday, I got up twice.) If you're crocheting a binding around, you may be able to just put an extra loop there for a button loop, and then stitch a big button to the other side.
Thanks for sharing the idea! I hope it works.
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Good morning, MountainMia. How are you doing today?
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Re vitamins: I had a consult with an experienced Integrative cancer doctor who gave me a TON of supplements to take... The MO I saw in my home area was not enthusiastic about vitamins other than D, but did accept that I was taking them. The standard MO objection comes from the lack of the double blind studies re vitamin use during chemo, so they err on the side of caution fearing that the antioxidants might affect the chemo as chemo creates inflammation and antioxidants reduce it. But the Integrative Onc has been using them for decades with great results. I decided to go for it. The integrative doc is Dr Keith Block, and he's got a book called "Life Over Cancer" that explains about it.
I am a data point of one but I think the supplements helped me a lot. I am still on all of them. During chemo I had very few SEs, no nail or skin issues, no mouth sores, etc -- and I had a very speedy recovery. Post surgery my healing was great. Post rads healing also. No lingering issues at all; I am feeling very good now. (I am 5 months post final chemo, 4 months post surgery and 7 weeks post rads. I feel excellent! And I had a pCR.
The food-based supplements I took included organic whey protein isolate (for protein), matcha green tea, reishi mushroom powder, "super greens" powder (dessicated green juice). The vitamins were: Curcumin, Omega 3 fish oil, D, B6, Quercetin, Ubiquinol, Alpha Lipoic Acid, Revastarol, Selenium, and Magnesium Citrate. Also took metformin & melatonin. The preceeding were all taken all daily. Starting on the day before each chemo, I also took L-Glutamine for 3 days.
These supplements were recommended to ME (TNBC) and might differ a bit for other people/cancers, but my point is that the MO party line on supplements is extremely different doc to doc. When after 3 chemos my MO could not feel my tumor he said, "keep doing what you're doing!"
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HappyAnyway, thanks for asking. I feel fine from the standpoint of my allergic reaction. But I didn't get enough sleep last night. I think a lot of the benadryl effect was gone and the steroids took over! I'll get a nap this afternoon and expect tonight will be better.
How about you? Are you feeling any better about your hair? I haven't cut mine yet and it's annoying me enough to just feel like doing it now, but my husband isn't ready. So I'll wait.
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MountainMia, I hope you are able to take a nap. Maybe you can get your husband to snuggle you.
I'm shedding like crazy. My sister is coming over tomorrow. I'm thinking about shaving my head while she's here. Would definitely make a momentous Mother's Day! I'm nervous about it, it's inevitable. My new mantra is bald IS beautiful.
I'm looking at makeup tutorials to try to play up my eyes, my husband's favorite feature. I really don't want a wig, but am thinking about getting one to surprise him on occasion. Wink, wink!
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Santabarbarian, thanks for stopping by. You are a great inspiration to me.
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Hi all. I'm probably starting TCHP later this month (date hasn't been set, but I get a port next week). My MO says a majority of people start feeling better after the first week and most normal the week before the next round but I'm not sure if she's sugar-coating just a wee bit. She recommended doing normal activities and exercise as much as possible. She talked about many SEs but not neuropathy, mouth sores, or food tasting bad (which I read about a lot). I'm worried about losing weight because I am already skinny.
The conversation here about supplements is interesting. My MO said she's ok with any OTC supplements but to call if I have any questions about what I can take.
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Welcome melza89 - sorry you have to join us but this is a great group for asking questions, sharing experiences and supporting each other. I had my first round of 6 TCHP on 4/30. MO is correct - first week rough, 2nd week a little better and I assume 3rd even better (I'm just finishing up 2nd week). Then of course they hit you again.
I lost 7 pounds the first week - but put one on this week so far. You will want to stay ahead of the nausea with whatever medication they give you. You might also consider having protein shakes at the ready for when you don't feel hungry but need the protein.
Food definitely tastes 'off' (I would have sworn my husband put salt on the strawberries last week! but I found all fruit tasted salty to me). I haven't had mouth sores - thankfully and no neuropathy (at least as of yet).
Thanks for the info Santabarbarian - I may push my MO this week to see if I can get back on some of my supplements.
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hi all, yes, Santabarbarian offers many great ideas and has really offered a wealth of info on supplement information. I am so happy that they are working for her. I had a terrible night last night. I felt like my head was going to explode. It continued until morning. No sleep. I also had dry heaves at 5 AM. We called the doctor on call and he told me to take 3 Advil every 8 hours and anti nausea meds. Headache has let up some, but I am whipped. This is my 3rd day post chemo , so I guess I should have expected as such. I am seriously considering not continuing, as chemo only gives an average of 15% benefit for me. Maybe I'll feel differently tomorrow. Can anyone tell me if these se's will be lessened over time? God Bless all who have endured it. Perhaps I am just a wuss. Sorry for the rant.
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UpstateNYer, it will get better. I take my anti nausea med as prescribed the evening of chemo and the following 2-3 days. I'm really sorry that you're having a hard time. Praying for you. Hugs.
I've heard that some MO will prescribe two anti nausea meds to alternate. Mine didn't, but I do take ginger capsules, 500-550 mg, that he recommended to help with nausea.
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Happy Mother's Day! I hope that it will be a good one for you all.
I'm off to a rough start. I feel weak. My hands are shaky and I don't have enough strength to open my pills. My hair is driving me crazy. My head itches. I'm a nervous wreck.
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Happyanyway, I am so sorry that you're having a rough time. You deserve a peaceful, pain free Mother's Day. Sending you (((hugs))) as well. Ugh. What did we do to deserve this??? I am down as well. I am doing a wee bit better than yesterday. Headache still clustered. I am going to question the docs on benefits vs se's. In my case, not sure if chemo benefits outweigh these horrible side effects. Happy Mothers day to all of you brave ladies.
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I had my first AC infusion on Thursday. So far my side effects have been minimal. Some hiccupping and fuzzy head but other than that I have made it through okay. Does anyone know how long the side effects last?? Not sure what to expect at this point. Hope everyone else is doing well and thank you for the chemo tips.
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HappyAnyway & UpstateNYer - sorry to hear you both had down days. I was emotional this morning - so tired of upset stomach & constant bloating. I called MO this morning and they gave me a Rx dose of Lomotil for diarrhea. It really seemed to help. I felt almost normal this afternoon. I think the thing I have learned this first round is that I haven't pushed hard enough when I'm feeling yucky to have them manage the SE's better. I just kept thinking I'm doing something wrong - it's all me. My neighbors daughter-in-law is an oncology RN studying to be a NP and she said PUSH them. They have a huge arsenal of drugs to combat all types of side effects. So if we're miserable we need to speak up. I was waiting until my breaking point (and miserable tears) before I called.
mpv459 - my chemo is TCH+P so a little different. But my understanding is many on AC experience SE's days 3-5 so you may be good. Others may be able to help more. I do know from reading in the April group that some on AC said SE's were minimal - especially that first round.
Thought I would share my buzzed head pic. I had my mental day (breakdown/tears) the day before so I didn't do too bad day of.
My latest motto is 'Fake it 'til You Make it' - this pic embodies that!
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Alicesneed, you look amazing. I'm sorry you've had a rough time. Hopefully with the SE help and the hair fait accompli, you'll feel more comfortable.
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Go for my first round of TC at 9am tomorrow I took the steroids starting this morning and I'm not sure if they caused by awful headache and leg pain or if it was a coincidence being today is Mothers Day and I've been on my feet all day. Anyway I hope everyone is doing well and I pray I have no reactions to this treatment. I have been crying off and on for days, so glad to know I have this forum to vent to.💕
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Good luck, TTrotter. I hope it goes easily for you.
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