Starting Chemo June 2014
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Basia you are describing my experience with Neulasta - I liken it to labor contractions, except it's 10x more painful. It washes right up from both feet into my leg bones, hips and through to my shoulders, about very five minutes for 24 hrs or so. So messed up and hard to describe to someone else! BTW, Taxol is much easier, no fogginess or fluish feelings to speak of.
Not much is very appealing as far as food, I do like my Mrs Grass chicken noodle soup though! It's a childhood thing I guess, it's not my pick normally, processed and salty.
Had enough this morning and went outside and worked in the yard for 4 hours, even though I was advised not to because of mold spores?! Anyone else told not to do yard work? Every night I drive in from work and see the overgrown planter & I couldn't stand it - my husband is super busy and the 16 year old, well, spiders. Ahh, it felt great but my stamina is definitely suffering and I had to take lots of breaks.
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My new MO has agreed to add Perjeta to my Taxol and Herceptin (as long as my ins will cover it). I will start that on Sept 3rd. Will your treatments be weekly or bi-weekly? I'm a little concerned about the Perjeta because there seem to be a lot of women that had harder side effects from it.
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Basia , will you continue Herceptin and Perjeta for a year, or only Herceptin? Sorry to hear you have had so many side effects with AC. My main side effect difficulty on TCHP has been daily cramping and diarrhea. I stick pretty close to home or have an escape plan since it is unpredictable, despite Immodium and Lomotil. There are other issues, but that is the one that has impacted my life the most!
The results of pairing Herceptin and Perjeta in the battle against Her2neu are impressive!
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Fiona, as far as I know, i will be on P&H for 3 years. This is a recurrence for me and my MO wants to take on a very aggressive approach. He is concerned because I was already on H for a year and it came back, so my body may not be responding to H. He said P is still so new he isn't sure how long I really need to be on it. So basically its prepare myself for 3 years and pray that it will be less. But I never want to go thru this again, so if I have to deal with P&H for a long time, I will. I have two 7 year olds at home that need me to be healthy
I have to brag about my little ones, yesterday I was so miserable, couldn't get out of bed at certain points. They made me a snack and a card and brought it to my bedside. Then when I finally felt well enough to get out of bed for a bit, they ran into my bedroom, locked the door and straightened it out for me and left me notes all over my bed with their stuffed animals telling me how much they loved me and how I need to feel better. Love my little angels
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I am on AC and this was number 3 for me the dr cut the strength of it to 80% versus the 100% I have been getting due to nausea and fatigue. Has anyone else out there did it? I am on day 3 and am still feeling ok. Even was out all day yesterday. Was that a bad move on my part. Just wondering if anyone else has cut the strength ?
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Cammy, my third AC will be this Friday...I think the strength will depend on my blood counts...I think you are fine to cut the strength a little. They are trying to cure you, not kill you so they will give you what you can handle!
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Fionascotti - I am also HER2+ but am not on Perjeta. Sounds like it's not easy to take. I find the variation of treatment interesting. What size was your tumor? My ONC said he wasn't going to use AC because of my stage and the size of my tumor. He said if my tumor was larger than 1cm and/or I was lymph positive, he would have used "the big guns". My digestive tract takes a hit every time I get my big doses (every 3 weeks). I have herceptin every week - combined with the big dose and alone on the in-between weeks. How are you fairing with your big doses?
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Canuckmom - the bear looks like a crime scene!
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Basia,
You're so lucky to have those two kiddies! I would've been in tears with joy!
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does anyone have hair left on their head? I have more bald than hair. I buzzed it 3 weeks ago. Most fell out but the stuff that didn't feels really soft and it seems to be growing!
I only need to shave my legs like every 3 days!
I go for AC #3 this week!
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Islandmama2 - same here - I have about 1/4 of my hair. I look like a bird that doesn't have its flight feathers yet. I go for TCH #3 next week. My legs and armpits are devoid of hair. Still have eyebrows and lashes (whew!)
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Islandmama, I still have patches on my head (shaved short). I also have longer, thinner strands. My eyebrows & eyelashes have thinned out but are still there. I still have to shave my legs.
Lots of hair on my arms still...grrr.
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Islandmama,
My hair is similar to yours but I keep shaving it b/c the hairs actually annoy me!
Canuck, I still have all the hair on my arms too! Figures! I am underarm hair free though...very strange!
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Basia...your little ones do sound like sweet angels! You have every reason to keep going with Perjeta and Herceptin and from what I understand the combo approach has shown a really good outcome. I wish you the very very best!
Hikingandhorses....I get everything every three weeks and feel pretty rough for the first week or so, and my digestive tract stays pretty riled up the whole time. My tumor was 1.3 cm and my oncologist put me on Perjeta in addition Herceptin because she said it had been approved and indicated for 'neoadjuvant ' use and my tumor fit the parameters.
My hair is sparse on my head, I buzzed it around Day 14 of my first treatment cycle when it was falling out in clumps. Each cycle my scalp gets really tender and sore and it seems more hair drops out, but it is so short it's hard to really tell how much. I rarely need to shave my legs. One perk!
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Sorry I've been MIA, my BFF was in town for a week and just left today. It was awesome having her here, and I'm so sad she's gone.
Round #3 of AC knocked me on my butt. The nausea was intense this time. I started getting nauseous during the infusion and it lasted for a good 6-7 days. Ugh. I usually suck on ice chips to ward off mouth sores, so now the mere *thought* of ice makes my stomach tighten and my jaw clench. I think I'll be taking Otter Pops with me for Round #4 on Thursday. I also had a nice little go round with fevers/chills last Wed & Thursday night. The first two rounds, it didn't hit me until Friday night, and only on that one day. I technically should have called the onc with what my temps were reading, but by morning my temps were back to normal. I did tell them during blood check last week, so they put me on a broad spectrum antibiotic just to keep anything that might be brewing at bay.
This whole hair thing is so freaking weird. I haven't shaved my legs or pits in about 3 weeks now. That's the one part of all this I'm going to miss! I still have eyebrows and eyelashes, arm hair, nose hair, etc. Down south is bare - that all went first. I have about the same amount on my head as IslandMama - I never did shave it completely, either.
As for weight - putting on 1lb a week over here. I complained to my onc and he said that was typical. I remember thinking that I would loose weight on chemo - I wish!
The being weak part drives me bonkers, too. I run my own business and toss 40-50 lb boxes around on a daily basis. Now, I'm relegated to needing help most days. It's so damn infuriating. That's probably been the biggest struggle for me, not being at 100% and being able to go, go, go all the time.
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Round 4 of AC was yesterday. No hives or red scary veins this time. I'm happy about that. Neulasta shot was today. I'm already tired. That's different than the last 3 times. The other times I was flying from the steroids for 2 days. Had a real rough 1st weekend with round 3. Hoping that is not the case this time!
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Radical - I hope you have minimal SE's...I hope you have none actually but that's wishful thinking!
Islandmama - thinking of you tomorrow...hope it goes smoothly
Kimmyd, I drink fruit infused water during tx and the thought of it is enough to cause severe nausea...I get what u mean about the ice chips. I'm not sure what I will do for the next one. I need something to keep the chemical taste out of my mouth!
Love to all....
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aw thanks Canuck!
I had my half dose of Adriamycin today and get the other half tomorrow with the cyclophosphamide.
My neutrophils were too low 2 days ago for chemo but they came up enough for chemo today.
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Last round of AC was today!!!
No nausea in the chair at all. I actually slept most of the time. My BFF's visit wore me out. When I was awake, I was drinking/eating a Cherry Slush from Sonic that I froze the night before. I just couldn't stomach the thought of ice. Ugh. Speaking of nausea, I'm an absolute idiot. I'm blaming the chemo brain for this one, b/c I have no other explanation. I was so SOOO nauseous during Round 3 and couldn't figure out why. Well, last night when I was packing my chemo bag, I discovered my pack of Emend pills from last week. I took the one before the infusion, but apparently never took the other two pills for the 2 days post infusion. I was taking the other pill they give me, but not the most important one. D'oh! I will NOT be making that same mistake this time.
Hope everyone is doing well. If there is anyone doing dose dense Taxol, I'd love to hear about it.
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Lol, Kimmyd - that's funny, but geez...poor thing!
Islandmama, I went for bloodwork today and to see my onc. She said my WBC counts are 1.1 and they have to be 1.5 for chemo. They are checking again tomorrow and if they are too low still they will give me that shot everyone complains about and make me wait another week...not happy at all.
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Canuck
Mine went from 1.02 to 2.13 in less than 24 hours! Praying it goes up!
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oh Dex, please let me sleep!
The Ativan didn't work tonight! Too hungry and wired!
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Oh Islandmama,
I feel for you! All these crazy drugs... I either can't sleep, can't poop, can't stay awake or can't stay away from the bathroom!
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haha Radical, that about sums it up!
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true radical!
Or can't eat or can't stop eating!
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Hi all , I hope all is well as best as best can be expected. I go in for my last A/C today. And then on to Taxol.Kimmy Im not sure what you mean about does dense, sorry. Is that more taxol in one treatment, for less infusions? My nurse said they always give taxol in 12 weeks. BTW I do the ice chips only while they give the red devil and it has helped so far, no mouth sores...
Island Does the Ativan usually work for you? My regular Dr gave me ambien, well that doesn't work on chemo days very well.
Radical can I add one to your list? Anyone having intense hot flashes? How about nails that are turning black? I have lost all my hair except eyebrows and I still have some below...yuck
You ladies are AMAZING....I feel like crap all the time, I don't have a job and I don't have little ones to keep me busy. Anyone else like me? What do you do? I'm trying to stay a positive as I can. I do try and keep up on the house chore as best I can. As for going out in public and doing stuff, I still don't like to, but I guess most don't when it going to be 105 today...but honestly I don't like to go out. Anyone feel that way? All right enough of that. Best go and get ready for my date with A/C...Have a great day everyone.
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Laurais,
I'm with you! Hot flashes at age 36...who would've thought? On the up side, no period!
I do not have kids and I'm on leave from my job. Netflix is awesome when I don't feel well. I plan at least one big outing for the weekends when I'm up to it to give myself something to look forward to. Last weekend I went to see Toby Keith. I do short visits with friends on other days. I hate when they come here b/c I really don't want to clean or play hostess. My friends have been great though when I just pop in for an hour... I try to go when the little ones are at camp and such!
No nail issues yet....but I keep them painted dark just in case!
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the hot flashes are horrible. But there is a pill for that, lol. There is a pill for everything, right? I feel like I have a pharmacy in my med cabinet, it has never been so full! Seriously, there is a pill for the hot flashes, talk to your dr. I take gabapentin 300mg once daily and it reduces the number of hot flashes I get.
I really don't like going out in public these days, I do it because I have to with the kids, but when they are in camp or with grandma, I enjoy just being home alone. Turning into a hermit.
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I haven't required the Ativan for nausea just for sleep but my onc says it works
I take Emend, Zofran and dex and get no nausea!
AC #3 done today!
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Island, too bad we aren't at the same cancer centre, I did AC 3 today too!
My counts were at 3.4 today! I am fasting but I took a vitamin b12, vitamin b6, green tea and a multivitamin this am. I don't know if that helped but that was a big jump from 1.1!
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