Anyone starting chemo August 2016?
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Seq24 - I had my 3rd A/C last Wednesday. Previous 2 I would feel great my Monday but this time the fatigue is sticking around. I'd take a shower and have to rest after before doing my make-up. Taste buds seem to be worse this time too. Again, everyone is different so it may not change for you.
Hope that helps ☺️
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My AC was reduced 20% after the first one which hit me very hard. Infusions 2 and 3 were much better for me. Even though infusion 4 of AC was still reduced, that one hit me the hardest. The chemo affects everyone differently. I was told Taxol would be a breeze after AC but I am finding Taxol much more difficult. Take care.
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Blood Test yesterday was good so Chemo tomorrow. Talked to my MO and in the hopes of keeping me out of the hospital this time, he is going to reduce the dose. I hope it works.
After that I start 4 sessions of Taxol. I have also heard it is supposed to be easier. So I guess we'll see.
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I had my first DD Taxol yesterday. Was scared to death of having the breathing problems, but sailed through. They did slow it up a bit this first time so it took four instead of 3 hours, next time will be normal time. Going to choke down my glutamine now, ugh! Hope everyone is having a good day
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Interesting that you are taking glutamine. Who told you about it? My onco did not say a word about it but a volunteer from Reach for Recovery mentioned it to me two weeks ago when I was in severe pain after my first Taxol infusion. I have been taking 500 mg twice a day since. Had my second Taxol this past Tuesday and starting to feel achy today but hoping that with the reduced dosage and the glutamine that it will be better. Take care.
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I'm curious about the glutamine also. I take taxotere rather than Taxol. I thought the pain was due to the Neulasta. I'll have to ch with MO. I read online that it can even help during radiation. Thanks for the tip.
Jiffrig, so glad you didn't have issues with infusion.
Yay Elizabeth. Now just stay well!!!
Hope everyone else enjoys their Thursday
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My MO suggested the B vitamins and I asked about l-glutamine powder after hearing about on these boards. 10 mg 3 times a day. I am not sure if it's for the neuropathy or achiness from taxanes. I asked her yesterday and she said it was OK but did not necessarily recommend it. She said you should not have bone pain just achiness and neuropathy with taxol. And then not with first one. Although I am doing DD (4x every 2 weeks) just taxol, nothing else. If you mix carboltin (?) in it may be different. I had that with AC. Search glutamine here and see what people say
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I just found this site about Lymphedema, it also has a store that sells the medic alert bracelets just for Lymphedema. Remember it only takes one removed lymph node to make you likely to get it if you are not careful.
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Hello ladies ... I have just spent the last 36 hours with the worst out of body experience ...I started itching Tuesday evening & I have had a red, itchy rash from my armpits to my knees. I absolutely thought I wasn't going to make it. I got a prescription yesterday but it didn't help till about 2 am this morning when I fell asleep. I bought every cream or lotion I could. Benadryl, cortisone, calimine, aloe vera, cold packs and soaked in soda bath ....only moments of relief .... Of course MO said it was the chemo. Are we supposed to live like this? I think the rash has taken over my mind & body.
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Hello ladies Im sorry so many side effects
CALIGIRL A few years ago my husband broke out in a terriblr rash, tried everything like you finally had to go to emergency room as it was hives, an allergic reaction. They look like welts more than a bumpy rash. He needed a shot of something there because they just got worse there was no way to take care of it at home. I thought of this when i read your post
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Dara and Lyn - glad you guys seem to feel the same way I do about doing what works best for you! Thanks for responding to my musings.
Marlene - So sorry you are having such a rough go of it. Please continue to keep us updated on how these last Taxols go for you.
Seq24 - My 3rd AC was my worst. I still didn't take anytime off of work, so it didn't completely knock me over, but I was sick all weekend (I got my infusion on a Thursday). Worst nausea yet by far and just exhausted. I had my forth last Thursday and I was pretty nervous but it was not as bad.
Caligirl - So sorry about the rash!! That sounds horrible!
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Caligirl...yikes itching is sometimes worse than pain. I had that kind of rash several years ago, it was vasculitis and was on steroids for months. My MO said yesterday that rash is a possibility with taxanes. This is so nuts. I am a total control freak and this is a challenge for me never knowing what is coming next! Hope they got it under control for you. Probably more steroids which offers its own fun times. Let us know how you are doing
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Eeek! That sounds so scary, Caligirl55. I'm surprised you weren't sent to the ER for an Epi injection.
Lyn
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Cali, that is really scary! I had hives quite a few years ago as the result of an allergy to sulfa. Does your reaction have any implications for your last infusion, or will they just give you extra steroids and benedryl? We all just need to be done with this! t seems that several of us had a harder time after the 3rd tx. Any of you had your 4th already and if sows it any worse? I hear that certain things are cumulative which would make it seem that the 4th might be harder.
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oh dear Dara I pray our forth isn't worse. I am trying my hardest to be brave but it becoming impossible. I have heard where some get a shot or something fast acting at ER. I wish I had known that before I suffered for 48 hours. I get some relief when the Atarax takes over but by then I fall asleep and I agree sleep is better than itching. I will talk to my MO before my next treatment otherwise why bother?
Jiffrig... We have no saying in all this. I too hate having no control over my body for sure.
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I understand about wanting to be put together .. Even when I ran an in home daycare I got up showered and ran mine as a business ... No curlers & robe at the door for me. I was relaxing the other day & a young kid trying to get pledges for jog a thon was at the door ... I had to get my little cap on straight. I have never felt I look better bawled my DH is so good to me telling me how great I look. I am hoping if I'm better Saturday to attend a wedding my son is best man in with my wig on. We will see if I can pull it off
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Caligirl & Dara -- I am so sorry you are having so many problems. Even though I have been in the hospital, I have had nothing as bad as you guys have gone through. I hope things get better.
On Wednesday, I was rushing to get out of the house for my blood test and forgot my hat. My hubby didn't say anything either, so I was a old bald lady running around for the morning. LOL.... I usually wear one for other people, they seem so weirded out by the bald head.
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So very sorry you had to suffer like this. Praying you feel better soon.
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I'm surprised your MO said no bone pain with Taxol because I am having a lot of bone pain, and I am not having Neulasta while on Taxol. Yes, I have a lot of achyness too and unsteadiness when walking. Had my second taxol on Tuesday at a reduced dosage and like clockwork at 3 pm yesterday which was day 3 the side effects started. Had a rough night but praying today will be better. I don't like to take pills if I don't have to but I broke down and started taking motrin last night. I'm continuing with the claritin as well. I was told that the glutamine helps to prevent neuropathy. I am noticing that my hands tingle and fall asleep a lot. Two more taxols to go. Praying that the last two aren't any worse. Going to ask onco to keep me at the 23% reduction. Praying for all you gals that God gives us the courage to keep killing the cancer.
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Hi Everyone! I just got this in my email, and with everyone dealing with cruddy side effects I thought I'd share- have no idea what it'll be like! It's a webinar for 12-1 ET today.
During today's program, Hope S. Rugo, MD, will help you learn about:
- short-term side effects caused by breast cancer treatment
- medicines and other methods to help manage these side effects
- how to talk with your medical team to get the most relief, whether you are newly diagnosed, in treatment or living with metastatic breast cancer
Here's how you can participate:
- To join by phone, dial 877-407-1876
- To join by web, go to http://incomm.webcasts.com/viewer/, then
- Enter presentation number 1108214
- Enter required information and click Submit
Audio will be streamed via the web. If you do not have speakers, dial in via phone (instructions above). Just make sure you select Listen by Phone in the upper left side of your screen.
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Thanks Kelly. I'll try to join in and see what they say. I'm trying to wear my wig a little more often to get used to it. It tends to bug me after about an hour. I'm hoping once the weather cools a little more it will be more comfortable.
Quick update on my little grandson (with the issues in the school placement) Looks like this will get nasty and become a legal issue. My DD had a 2 hr IEP and is getting advocates and lawyers involved. I really hate to say it, but I also worry that there is a racial issue at play as well. Very hard to feel I'm not in a position to be around like I used to to help with the kids.
I'm finally doing so very much better. Yesterday was the first day I got out and didn't even take a nap! Bone pain is minimal, dizziness is gone, mouth is almost back to normal. (Things still taste pretty bitter) etc. Now I just have a little over a week before my last one. No matter what happens, the thought that that's it is keeping me going!
Hope you all have a nice Friday and no one is experiencing any weather issues. Dara
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So glad to hear Dara on your side effects! It's frustrating for me to hear about your grandson, I can only imagine how that just adds to what you're going through. I hope Cali and Marlene are doing better. Elizabeth I love that your rocked the bald head! I wish I had less stubble- it's like a man receding with the wrap around stubble across the back.
Annie- back to your head question- I'm just doing scarfs and beanies (when the weather is cooler)....but only going into a small office at work maybe once a month lol. The guys and gals are used to me wearing things on my head so its ok (but I wore hoop earrings this week, and one of them said I have a pirate look lol....its all good and I was fine with it and got a good chuckle).
I know I'm forgetting folks....I'm on different combo of drugs then a lot of you, so not sure if that's why my side effects are slightly different.
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Hello everyone. Sorry I have not posted in a while, but life has been keeping me busy. The city where I work was experiencing some severe flooding. One of my work's manufacturing facilities was in the flood zone, so lots of work done to prepare for the flood. Luckily, due to an amazing effort by our employees, our city (lots and lots of Hesco barriers), and a crest of 2 feet less than expected (flood stage for us is 12 feet and our river crested at 22 feet), we did not take on any water. Lot's of work for practice, but much better than cleanup after a flood!!! Home has been a little hectic as well. My mother in law is having a pace maker installed on Monday. A little unexpected. She went in for a check-up (Mayo) and they suggested the pacemaker. So, we will be praying for an easy surgery for her and will be dog sitting for a few extra days. Luckily their dog gets along well with our 2 dogs. Tomorrow we are going to watch my son's marching band competition (he plays trombone). Looking forward to that! Hope to find a nice secluded area in the bleachers though... Tonight I think we will go see Miss Peregrines School for Peculiar Children with my daughter.
My next treatment is next Thursday. My husband will be travelling Tuesday returning on Wednesday, In laws returning on Wednesday and staying at our house that night, My mom arriving on Wednesday (with her dog too), Treatment on Thursday, Husband leaving on Friday for more work travel through the weekend, and mom staying with me through the weekend. Will be great to have everyone there on Wednesday (I love my in-laws and my mom), but whew! Kind of a whirlwind week.
Luckily, I am feeling pretty good. Aside from fatigue that creeps up on me pretty quickly, I am without many side effects right now (day 15). My tongue is tasting things almost normally, a few headaches here and there (usually on days when I overdo it), but right now that is about it. My WBC and Neutrophils are still low again this time (below 1). Not sure why the neulasta isn't working for me... So, trying to keep to myself as much as I can at work and washing my hands a lot. I've found that if I take off the day of my treatment (on Thursday) and work from home on Friday and Monday, that works pretty well for me. I'm still pretty fuzzy for a few days, so I run a little slower than normal. I am lucky to have my own space where I'm not in contact with a lot of people and a boss/company that allows a lot of flexibility. Also, I have worked from home a day here and there as needed.
This round was a little less severe in side effects than my first one. I still had flu like body aches/fatigue/headache, heartburn, and sore tongue, but I managed the heartburn with Prilosec as soon as it started. I did not have any bone pain this time (I started the Claritin the day of my neulasta shot and for about 5 days after). Much better than the spine, sternum, and rib pain on the first round. So far no neuropathy (I am taking B6 to help prevent it and also icing during taxotere). Headaches(right side migraines) and tongue issues seem to be the side effects that linger for me. I do occasionally get a shooting pain in my ribs. Not sure what that is all about, but it is short and not too intense. It does seem to subside as the weeks go on until the next treatment.
I'm so sorry for all those who are not feeling well. Just know this is temporary and we will get through it. Do your best to drink and eat well and call on your MO right away if your side effects are affecting you. There are a lot of options to control them now. Let others take care of you and don't worry about things that "need" to be done. I've found they will always wait for you. Listen to your body and give it what it needs.
My countdown has begun! If my treatments go as scheduled, it is less than 4 weeks until my last one. I am very much looking forward to having my PICC line taken out and they will take that out the day of my last infusion! The adhesive cover that holds it in place makes me so itchy. I know I will have a couple weeks of side effects after that, but I'm still holding onto the day of my last infusion as being done.
Have a good weekend everyone!
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Hi everyone. Today i had an appt with my surgeon and he was said my tumor has not shrunk from the two rounds of chemo i've had so far. Not bigger, but still i am quite disappointed. Two rounds to go.
Next week at my MO appt i'm going to ask about adding Perjeta. Initially i was told that it would only be available to me if my tumor were over 3 or 4 cm, and she would write an appeal to the government asking for special permission to use it. It is expensive, i gather. I'm in Canada.
I have really been hoping to be one of those people who has a very good response to neoadjuvant chemo. Less material to remove, less of a dent to fill in, better prognosis.
Anyone else not have much response to the first rounds of chemo? Then go on to a glorious response by the end?
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Tunegrrl, I'm sorry that you didn't get a dramatic response so far. That must be disappointing. At less than 1/2 inch (I wish I'd learned the metric system!), your tumor is small in terms of surgery. Still, I hope you see a reduction as your treatment continues. Yes, Perjeta is extremely expensive and it's only been approved for neoadjuvant use for tumors larger than 2 cm in the U.S. based on the manufacturer's clinical studies.
Ladies, where are you buying your L-glutamine? With vitamins, I look for the USP seal, but I don't know if there is something comparable for other supplements.
Kechla, you're so close! The worst part of my PICC line (only two weeks for IV antibiotics) was not being able to sleep on my right side.
Lyn
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Kechla- well I know you're not in California- we'd love some rain- it's crazy how dry one section of the US is, while the other deals with floods. You have been busy! Glad to hear you're staying positive and enjoying the company.
Tunegrrl- I can imagine being disappointed.... I'm on chemo first as well, but my mass was about 4.5 cm, so I have had some success and it's shrinking, but it's still more than twice as big as yours. I agree with VLH, may have something to do with the size to begin with. The MO told me I won't necessarily see a change each time. I'm getting infusions every 21 days, so after my next one (next week #3 of 6), I'll go get an ultrasound so they can get a good gauge of what's happening. I have a feeling if they're not satisfied, maybe they'd change up the drugs, but that's a guess. Good luck- I hope you can obtain the drug you're wanting!!
So the mouth sores....I guess I wasn't really thinking I was getting them (clueless), but now I realize- yes, that's what's happening in mouth! I asked my NP today- soooooo would they be worse if I wasn't icing, or is the icing not working. She looked at me and said "I don't think it's working". I'm actually wondering if it's irritating my mouth??? So I'm going to be crazy and not do it Wed and see what happens. She did give me the magic mouthwash prescription. yum.
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I wanted to post this on this board since you ladies have been in the process a lot longer than I have. Just wondering if anyone has had to have dental work done during chemo. I unexpectedly lost part of a filling yesterday. Called my MO and of course she was out of the office. Talked to the nurse and she said dental work is not allowed during chemo because of risk of infection or bleeding. I really can't wait till chemo is done in late January and take a chance of more serious dental problems. Fixing it will only involve either replacing the filling or possibly a crown since there was a large chip out of the tooth to start with. No root canal or anything that would be more serious and involve getting into the gum area that would cause bleeding. My dentist was also out of the office so I can't get a hold of anyone till Monday. This is just my luck. Thoughts?
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I bought my L Glutamine at GNC.
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Seq, I was also told no dental work during chemo, but they might not have been referring to emergency work.
Kelly, I've been sucking on ice the last two infusions, and have still gotten mouth sores and thrush. I don't think the icing is working for me either. What I think helps the most is to start rinsing and gargling with baking soda the day I start chemo and go for about seen days after or until the mouth sores are gone.
Tunegrl, sorry you haven't had the result you hoped for. My tumor was 1.7cm but I did surgery first. Other than a tiny line for a scar, I can barely tell any difference at all post surgery and it was right smack in front on the upper side of the nipple area. So even if your tumor doesn't shrink more, you may find it's not too bad post surgery. I'll hope for more size reduction though.
Kechla, isn't it just the best to see the finish line getting so close? (at least for this phase?) I know I still have to do 30 rad tx, but other than that being every day for 6 weeks, most say it is so much easier with SEs. How is your cold capping working? I'm wondering if those that went that route are satisfied with the results?
Has anyone lost eyelashes and eyebrows yet? Mine have thinned but I still have a few. I've heard they can still come out up to 2 months after tx stops.
I'm heading into my good week so am excited. This tx really took 2 weeks to come back from, so I plan to do all sorts of fun things this next week. I have a family lunch tomorrow as long as everyone is healthy. I haven't seen my kids or grandkids for 3 weeks as they all got colds, and one had pink eye after the start of school. Really miss them all!
Hope all are feeling well by now and have a nice Saturday. Dara
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seg24 hi in regards to dental work, shortly after my second chemo I developed 2 abcessed teeth. I had to have 2 extractions and they were done on that 3rd week after chemo and i had to be on an antibiotic for 10 days. I know they will only do emergency work while on chemo. They also delayed chemo 1 week after surgery. Hope this helps, good luck.
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