Starting chemo February 2020
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This week was bad, I actually forgot to do a very important piece of work on Friday. Thankfully I remembered (out of the blue) Sunday morning and, got it done before the work got missed.
I had to put a reminder in my calendar to pay for my dignicap because I almost forgot (twice).
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Hi Tamijean,
We have a lot in common. I am 57 too and even though our diagnosis are different, it sounds like we are in the middle of the same chemo - AC + Taxol. I had my first Taxol last Thursday and was relieved not to have an allergic reaction. Icing hands and feet using ziploc bags taped together worked well except I need to put more like 3/4 or more full of ice next time instead of 2/3. I felt tired and weak until Monday afternoon, but feel more normal now. I agree with others about asking your doctor if they can tell if tumor has shrunk. I hear that chemo "melts away" triple negative cells, but I am not an expert. I have been reaching out more for support lately and one thing that was helpful was website for Living Beyond Breast Cancer (lbbc.org) can match you up on a phone call with someone who has survived similar situation.
I feel much better after talking to others in the same situation.
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Hello! It has been a long time since I’ve visited this site. I had my last infusion on Monday. I feel like junk, but it helps to know that it’s over! I have an appointment with my radiology oncologist next Monday. I’m ready for this trauma on my body to be over!
Regarding constipatiion- Oh my! It is awful on the days right after my infusion. Last round it was horrible soI used magnesium citrate. It was disgusting, but a few hours later it did it’s magic!
I’m definitely experiencing chemo brain. I have a hard time reading and focusing. The other day I couldn’t do simple math.
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I had thought I’d escaped the “chemo brain” but this week I found I’ve made quite a few simple/silly mistakes at work (teacher doing distance learning). This should be interesting by round 6
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Congrats craftylife on the last chemo!
dysonsphere - I just noticed some chemo brain the other day, when I couldn't remember a town that I normally would. It took me a minute to gather my thoughts and it was disconcerting.
Has anyone in our group had any changes to their treatment plan because of Covid 19? So far mine is the same, but I haven't really met with doctors much, just a quick check up before chemo every three weeks. The days are so long and I'm getting antsy to get moving on to the next phase, but my last chemo is not until 5/26. I think my nurse coordinator said I'll meet with my surgeon again around my fifth treatment, which is less than two weeks from now. So I'm wondering if at my 5 treatment we'll start making some appointments. Also, I think I'm going back in for another echo next month to check how the herceptin has been on my heart. I appreciate that I don't have to go in alot, but it's also feeling so slow to the next step!
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@Fab4mom - I have an appointment with my surgeon on Monday (right before #5). I'll let you know what they have to say.
I'm being told that hospitals in NJ expect to be back to normal service in June and, my surgery would probably be end of June (last TCHP Is 5/20).
I'm hoping I get can my BMX and TEs done at that time, I don't want to go flat because of Coronavirus.
I also want to talk to my MO about what it might mean if I have to do Kadcycla. Does that mean I can't do anything exchange for a year?
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TexasMama - Congratulations on last treatment!
On constipation - I had it after 1st AC treatment too and it was painful when things started moving again, even though I started stool softeners once I knew what was happening. After that here's what worked for me with no yuckiness: 3 stool softeners/day (Ducusate Sodium 100mg) starting morning before infusion and for next 3 days. In evening or middle of night I took about 1 1/2 tsp of a Magnesium supplement (Magnesium carbonate 325mg per 2 tsp) by Natural Vitality called Calm. It's available at Walmart in a tasty raspberry lemon flavor. You dissolve powder in about 2 oz warm water and it's fizzy. Then add a few more oz of water and drink. It relaxes (helps sleep) and helps with muscle soreness too which were other side effects I had. Even though things stopped moving for up to 1 day, when it started again it wasn't painful. Of course you probably want to clear these supplements with your doctor, but my oncologist is very restrictive on supplements in general and was fine with these.
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Maddy83f - thanks for tip on glutamine powder. I will check into it.
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My last treatment is next Tuesday - the 4th of my DD Taxol. This week, which is usually a "good" week for me has been pretty emotional. DD Taxol has definitely been more difficult than then DD AC was for me - both the join pain as well as the depression. Weather has also limited my ability to go for walks - I can walk in cold weather, but the rain has kept me inside. I have always loved to read but have found that my brain just can't focus enough for reading - has anyone else felt that way? The Glutamine powder has definitely kept any signs of neuropathy. I just feel very emotional about finally coming to the end of the chemo - I had envisioned a celebration but with social distancing that is not an option. I am also sad that my husband won't be able to be there - but that is just where things are right now. I have surgery in mid May to replace the tissue expanders and then radiation will begin 6 weeks later for 6 weeks. My short term disability ends at the end of May so I will be starting work again for the first time since the end of November. Lots of changes that I dont quite feel ready for..... my biggest 'concern' is how my hair will grow in
When my chemo started jan 21 I couldn't envision it ever ending - now the end is in sight and there are more "unknowns" ahead - but I am will be glad to have the chemo behind me.
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Happy Friday!
I finished my last TC treatment on April 16th. I am so glad it's over. The week following treatment was a week that I don't wish to ever repeat. The nausea was horrible, starting the next day. Food and water, including Propel, which usually gets me over the hump weren't going down. The thought of taking a Zofran to curb the nausea made we want to vomit. I went in for fluids on Tuesday and my blood pressure was 85/55. I was severely dehydrated. It took three sticks to find a vein and I nearly passed out (something that has never happened to me, ever)! They pumped some more Zofran into me, which helped a bit. I think I finally turned the corner yesterday. I can't taste anything but can at least eat and drink without feeling awful.
I cold capped and managed to keep about 50% of my hair. It still sheds and I'm anxious for it to start growing.
Does anyone have Raynaud's Syndrome? One of my SEs appears to be a worsening of the condition. I can be standing in the kitchen in a 72 degree house, wearing sweats and my hands go white instantly. It only used to happen when I had my hands in the freezer or outside in cold weather for an extended period of time. My hands were purple at treatment last week. The nurse was so concerned. Hoping it at least helps with any neuropathy since I'm typically feeling cold now.
I hope everyone who has additional treatments ahead does well and gets over this hurdle soon.
I head to the MO's office in two weeks to start adjuvant therapy. Hoping to postpone that I little bit longer as my body tries to recover.
Hope everyone has a wonderful weekend.
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Congrats on your last chemo Texasmama! Can't wait til I'm there. 8 more to go!
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congrats cricketdog. I'm so jealous of all the people getting final treatment already. I have 2 more to go
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Maddy83f- Sending you hugs. I’m glad you only have one more treatment but I’m sorry you’re having a rough time.
Cricketdog- Congratulations on finishing! I hope you feel better soon.
Hang in there Dysonsphere and morrigan 2575. It’ll all be over soon.
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For those of you experiencing taste issues - keeping ice in my mouth during the two chemo drugs (staring/ending 5 minutes on either side of them) has really helped for me. I did nothing the first round and got wicked mouth sores (at day 7) and starting about 3 days after treatment my tastebuds were ruined, mouth felt burned, and I didn't want to eat for 3 - 4 days, couldn't drink coffee or wine for two weeks, lost 5 lbs, etc. After 2nd round (when I did ice for first time), taste was only ruined for a couple days, no mouth sores, and I kept drinking coffee and was able to drink wine later. After 3rd round (also with ice) I hardly lost my appetite at all and no mouth sores.
Heading into 4th round... formulating a plan of attack for the constipation. Starting Miralax tomorrow (Sunday) in anticipation of chemo on Tuesday. Also going to drink tons of water, take max stool softeners per day (if I can combine with miralax) and I have a supply of prune juice and oatmeal. (and I'll cool it on the coffee and wine)
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How are your eyebrows and eyelashes? I haven’t completely lost mine, but they are quite thin.
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I'm on TCHP still have ally eyelashes. My eyebrows have thined out but, I still have them, I'd say still have about 85%.
I'm going for #5 on Wednesday. For those of you that had to wear masks how did you manage the ice chips? I didn't bother for #4 because I had the mask on.
I have a feeling that #5 will be difficult on an emotional level, mostly because I'm so close but, not at the end.
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I’m also on TCHP. I still have all my lashes and brows so far. I actually still have some small, ridiculous patches of hair on my head too and some VERY sparse hairs all over. I’m hopeful to keep my lashes and brows, but am prepared for them to thin or completely go since I still have 2 rounds left. Similar to Morrigan, I too feel like round 5 will be emotional because it’s not yet the end but so close. I go back in May 7 for round 5. I have my MUGA scan this Thursday. Hoping results a good (or at least unchanged from my first scan.) Hope everyone had a good weekend
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I still have hair on my arms and legs, I'd have been perfectly fine losing that hair. 😁
My MO said they were going to order my Echo but, I haven't heard that it's been approved. I'll call on Monday but, at this point if I can't get it scheduled for Tuesday I won't go for 2 weeks. Don't want to leave the house next week as my BC always drops after treatment
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I'm on TCHP - going for round #4 on Tuesday - and I don't think I've lost any eyebrows or eyelashes yet. I still have about 5% of my hair on my head (stubble) and I wish that would just completely fall out already so my head was smooth. I shaved my armpits and legs shortly after round #1 and it never grew back. From what I've read, eyebrows can hang on til very late in the rounds - but then go. A friend of mine who recently went through all this recommended the "eyebrow tattoo pen" which I have saved in my cart in Amazon, just in case. I've never done any maintenance to my eyebrows, and I'm not looking forward to the day I have to start. Since it'll be summer soon, I figure larger sunglasses may come in handy to cover them (rather, cover the absence of them). I almost feel like I could pull off the bald look with big sunglasses on. Like I'm trying to be chic or something.
I took the mask off to eat ice when I last went - my mouth sores were so severe that I couldn't not do the ice. If thought of no mask/protection bothers you - maybe get or make one of those plastic shields.
Anyone else getting pushed into premature menopause from this? I'm 45. I got one last period shortly after round #1 and haven't seen it since. Getting hot flashes now, I think - but not sure if that's chemo or menopause.
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micdpowers- My period has been sporadic since treatment started. I thought I lost it, but it magically appeared a few days again after round 4 (so pleasant while dealing with other side effects). It won't matter too much for me because after round 6 at the end of May I get to start ovary suppression and hormone treatment since I'm er/pr+. Yay for menopause at 34
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ajminn - Interesting. I haven't gotten that far in my discussion with my MO yet. One of the ones I met with said I'd have to do 2 years of Tomaxofin first before going to AIs. None have actually mentioned Estrogen Supression and AI right out the gate. I see a lot of women here go that path so I know it's an option.
I wonder what my MO has planned? I should probably ask now that we're getting closer. I haven't asked about long term since the start. I've spent the last couple f months just focusing on the present
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Morrigan- I was surprised he brought it up and hadn’t thought about it much other than just thinking, “5-10 years is going to be a long haul.” I guess I figured it would start after my year of HP for some reason, but it sounds like it’ll start sooner than that. I might be started with it because I’ve already done the surgery piece? Who knows. This is such a long road. I try to just take it one day at a time or it gets too oberwhelming
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Called the Cardiology Center about my Echo they aren't doing them due to COVID. I guess I'll have to ask the NP/MO on Wednesday as to what we're going to do going forward.
I saw my Breast Surgeon today. He told me they're scheduling procedures starting mid-May and we'll have no issue getting my BMX/Reconstruction in Mid-June. 😁. My surgeon said we could do this as Outpatient if I wanted so we're going to do the surgery at the Medical Center instead of the Hospital. I feel like this might be safer than the hospital plus, I hate hospitals and would rather go home then spend a night.
I'm going to setup a meeting with the PS in 2 weeks (to get over the post Chemo WBC). Just to see what he has to say. My Dr recommended one from his group but, I also want to check with my coworker who has a BMX 2 years ago, she really liked her PS and had really good results.
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the chemo is not working, they are now scheduling me for surgery next week. The tumour is growing quite rapidly. I hope getting the chemo wasn’t wasted time and health.....
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so sorry to hear that tamijean 😔
If you don't mind, what was your diagnosis?
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Morrigan....it is a triple negative..5.3cm......the AC worked but as soon as I started the taxol, the tumour went crazy....now a 6.9cm....i will now have surgery next week, a mastectomy and then radiation......they are going to send away for testing of chemo on this tumour to see what will work......
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Wow. I knew AC was really strong and Taxol was a bit milder but, that's crazy that it over took the Taxol. I'm glad your MO has a plan cut and that sounds promising. I've heard that genetic testing on the tumor is a good way to target the correct therapy.
Good luck with your surgery, rads and next treatment phase.
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Sorry to hear that tamijean. I will be thinking about you and praying for a successful and easy surgery!
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Tamijean- so sorry to hear about your tumor growing. I’ll be praying that you have a successful surgery and that they can get some testing on the tumor to provide you the best treatment plan possible. Ugh. Cancer sucks so much. It’s so unpredictable and unfair. We’re you able to find any resources or telegroups to meet with? Sending you my positive energy and strength!
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Tamijean, prayers for a successful surgery and for your strength during this difficult time. Please keep us posted.
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