Chemo group starting December 2014
Comments
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Nope, said Tylenol or ibuprophen...BUT...I'll take this over nausea ANY DAY!Are your taxol and Herceptin weekly doses? My taxol is weekly but my Herceptin and Perjeta are every three weeks.
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My Taxol and Herceptin are weekly x12, then Herceptin alone every three weeks to finish a full year. How long will you be on Taxol?
Menopause can also cause bladder pain, I don't know where you are in that process. Not very helpful info though, since we can't have any estrogen anyway so not much to be done about it except to know it usually gets better fairly quickly even without any treatment. The bladder numbing pills are OTC if you want to give them a try. It's just a local numbing med, no antibiotic so wouldn't be a problem with chemo or other meds. You could ask your pharmacist though to be sure.
I'll be curious whether you feel any different after the weeks you get Herceptin and Perjeta than the Taxol alone weeks. I'm wondering because some people on this board had SEwith their Herceptin given every three weeks in the higher dose, when they did fine with it weekly along with taxol. Tomorrow is just week 5 of the 12 so I'll cross that bridge when I get there. Seems like a very slow 12 weeks!
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I have 12 weeks of this (11 weeks to go) then Cyclophosphamide and Adriamycin (sp) for 8 weeks before a mastectomy. Did you lose your hair and if so, at what point, -
Mamamule - I am going to talk to my onc next time I see him and request a different NP. When they scheduled my appointments with her I expressed my lack of faith in her abilities and they said I can always request the Dr come in for just a minute to confirm her opinion but unfortunately whenever I have had to see or talk to her he has been out of the office those days. When I called yesterday about the severe bone and joint pain her solution to that was to take Advil, I told my husband I wanted to give her a Neulasta injection and tell her to take Advil for the discomfort and then sit and watch to see how well that went for her. Obviously if we are calling the office then chances are we have already tried taking the things we have readily available to us. She did change my prescription for Ambien to Ambien CR but unfortunately insurance does not cover the CR (I don't understand why they would cover one and not the other) so at $165 for 30 days that won't be an option for me. I am however going to do some research to see if I can get some discounts on that prescription. Okay, done ranting about the psycho NP (my new name for her).
I did get 8 hours of sleep last night, feeling good today.
Prayers to those grieving over the loss of a loved one as well as those who are experiencing bad side effects, hopefully today will be a better day.
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wheely - are you taking Claritin prior to your Neulasta? Many of us have found that Aleve, even though it is an OTC drug, works well for Neulasta pain.
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Specialk - Yes, I took the Claritin 2 days before, day of and 3 days after. It is weird but I did not have any pain until Sunday and my shot was Friday. Is that a normal time frame? The pain was not constant and only lasted about 1/2 hour each time but when it hit it was very intense. No pain since about 7 last night so hoping the worst is over.
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wheely - usually the pain starts sooner, but there is also a bone pain component to Taxotere, so it is difficult to tell if that is where it is coming from - the timing makes me more suspect that it is the chemo and not the Neulasta. One thing is that subsequent Neulasta may not cause as much discomfort - like a new pair of shoes or tight pair of jeans - your marrow had never previously been expanded. Now that it has, it is like the shoes or jeans have been a bit broken in, so next time may be easier. I found that heat helped me - a very warm bath or shower made a difference for me.
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I have been seeing a lot about nail issues, is that from the Cytoxin/Taxotere regimen or a different one. I have not experienced any nail issues yet but want to know if I need to be doing something as a preventative measure. I work on a computer all day for both of my jobs so that could present a problem for me as I am trying to miss as little work as possible. My boss allows me to work from home when I am unable to come to work which is a huge thing.
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wheely - taxane agents (both Taxol and Taxotere) have nail lifting as a side effect. Other agents damage nails with ridges, lines and peeling. I iced my fingers and toes during the Taxotere portion of my chemo, using bags of frozen peas. I brought them myself in a cooler, and did this for each infusion. In addition to taxanes causing lifting, they can also cause neuropathy. Neuropathy can be tingling, numbness or pain, particularly in the extremities. I used some supplements to try to keep neuropathy at bay - 30g of L-Glutamine (10g of powder dissolved in a cold drink 3 times a day) and a capsule of B6 daily. You should check with your MO on the icing (they may say it doesn't work or isn't necessary - but I would do it anyway - can't hurt, only help) and the supplements - some will approve, some won't.
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Thanks SpecialK - I knew about the neuropathy and have not had any of those side effects yet but was not aware of the nail issues. I will check with my onc about the glutamine before the next treatment on the 14th.
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Here is some info to take with you to support your request:
http://www.dana-farber.org/Health-Library/Alleviating-Peripheral-Neuropathy-Symptoms.aspx
http://www.ncbi.nlm.nih.gov/pubmed/15994152
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Hi all--got my head shaved yesterday and it is great not to be "shedding" all over the place. Found out that I don't look so bad with no hair! My hairdresser also trimmed my wig to make it look better/ more natural. I recommend doing that for any of you who, like me, will be wearing a wig to work. My question is--how long will my scalp be tender? Will that go away eventually? Anything I should be doing to make it less sensitive?
2nd chemo. tomorrow--hoping the SEs will be no worse and maybe better than first time around. I think for me the pain from the neulasta shot (which happened on day 6) was one of the worst things. Aleve and a heating pad helped me.
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Farmdau, when did you start to loose your hair? -
CanuckPrincess - I started to lose my hair on day 16 and it only took about 3 days for it to be so thin I had no choice but to shave it.
Farmdau - My scalp was very tender for the three days after it started to fall out but felt much better within a couple of days after shaving it.
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My hair started falling out on day 14, but I've heard it happens anywhere between day 14 and day 19 for most. I advise getting it shaved no later than a couple of days after it starts to fall out. I waited a bit too long and I had hair all over the place (thank goodness for my lint roller LOL)
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LOL I was 'warned' day 12-15 it would start. I already cut it short (took 10 inches off)...I'm SO ready!!! -
Wheelygirl, I'm glad to hear you're going to request a new nurse! As for the sleep meds, insurance probably doesn't want to cover the Ambien CR as it's quite a bit more expensive than regular Ambien. You might look into whether they'll approve it if your doctor submits a prior authorization request documenting that regular Ambien didn't work for you. Another option is to see whether insurance will cover Lunesta as it also works (in theory anyway) all night.
Did your doctor tell you to take the claritin for only 3 days after shot? Just wondering because mine said to take it for at least 7 days, and that it wouldn't hurt to take it every day to keep things simple. I've taken it every day and haven't felt so much as a twinge from the shot. I'm not getting Taxotere though....
Farmdau, I'm not far behind you with the hair loss. My day 14 is tomorrow, and I'm surprised every morning when I wake up and still have hair! Well, what's left of it anyway. I got a foot cut off it a couple weeks ago so it wouldn't be quite so traumatic when the clumps start coming out. My son offered to shave it for me, so I've bought some clippers and am just waiting. Hopefully I'll at least get to finish out 2014 with hair. Wow, it still blows my mind that I'm saying things like that! I only found out about my cancer last month and it's still kind of sinking in.
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Nail issues... reading lots of good info in this discussion... Just want to add the supplement my dermatologist recommended ..( background... her mother had Her2/neu positive breast cancer... ) For nails... biotin 10,000 mcg per day....
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FYI to all of you out there who are sporting a wig now...I made the mistake of cooking with my wig on tonight. Opened the 450 degree oven door to check on baked potatoes and later discovered that a few of the front (synthetic) hairs on my expensive wig were "frizzled" by the heat! Yikes. Maybe this was a "duh" moment, but never occurred to me. Guess it shows that I am getting comfortable (too) with my wig. It will be hats at home from now on...
Good luck to anyone who, like me, will be heading off for chemo in the morning!
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I hope everyone is doing ok today, the last day of 2014. Wow, what a year it has been for us on this journey.Yesterday I woke up with an earache and sore throat that has been with me a few days. MO nurse told me to go to my PCP and let them know what she said about it. I hope I can see her today. I have my second AC treatment Jan. 6. I hope I'm well by then. To add to not feeling well, my hair was coming out everywhere, exactly 2 weeks from the first treatment. So, I went and had it cut very, very short. I think everyone in the beauty shop was waiting on me to cry, but I hung on until I walked out the door. The tears came for a few minutes, my husband hugged me tight, I put on my hat, and off to lunch we went. I miss my shoulder length hair, it kept my neck warm. But it does make me feel like the chemo medicine must be working because I'm having to say goodbye to my hair. God is good all the time and with him anything is possible ! ... My wish for all of us in 2015 is for us to win our battle with breast cancer. Stay strong ladies !
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The hair thing really sucks! You do get use to it though. We have only told family and very close friends and of course my co-workers about the bc diagnosis. Yesterday our neighbor knocked on the door to talk to my husband and when I opened the door I thought the poor old guy was gonna faint (I forgot to put my hat on). I felt so bad for him afterward, my husband did explain everything to him and he was very concerned and apologetic. Like I said you do get use to the missing hair. lol
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Wheely Girl, about nails - I didn't have any issues until my 5th of 6 cycles (I was getting infusions every three weeks). My thumb and first two fingernails on each hand started hurting and looking like I'd slammed them in a door a little bit. So for round 6 I iced with frozen peas, like Special K mentioned. Now, 2.5 weeks out from round 6, they aren't any worse and are hurting a bit less. So I think the icing helped.
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I would also advocate icing early in the process - sometimes icing in the last infusions can't stop the lifting process. Also, some of this damage can be permanent, so best to prevent, if possible.
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I agree. My cancer center doesn't suggest any icing at all, and I wish I had started sooner.
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Sophie 14--I got a sore throat and earache (only on right side) about a week after my first chemo. Saw my PCP who said they were not infected, so I just had to wait it out. Earache lasted about 3 days but throat was sore (not horribly) for over a week. Hope it doesn't happen again with chemo I just had today. And I hope you will be feeling better soon.
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cassie - most centers don't, and don't sponsor or offer any equipment for it. It is something patients pretty much do of their own accord, but I sure wish oncologists would educate their patients about onycholysis (nail loss/lifting) and offer voluntary icing. Mine had no objections, but didn't offer any facilitation either.
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Hi ladies, I am checking in here to see how everyone is doing. Sometimes it is hard to follow everyone here do to the format. My hair loss started with some scalp itching around day 14. By day 15 it was pulling out fairly easily and i shaved most except the very top to a number one cut. I think it is growing on the top and i am going to have hubby take the top to a number 1 today. I have used the antibacterial soap i had to use for pre surgery prep to keep things clean on top and no probs. I dont mind having no hair and we all know it is a chapter with an ending and our hair will all grow back. I still have eyebrows and most body hair, some thiinning down below.
i have some dark lines in my one thumb and a new area of discoloration on another nail developing. Leslieinva suggested tea tree oil to help with that and I have read that too. The Lglutamine powder three times a day helps a lot of the minor symptoms, I am still taking COq10 with turmeric and also milk thisle for liver support then my daily multi, D3 x 5000 day (i am low) and cal-mag too...and some E 400 mg and fish oil too..and buffered C powder all for support. Trying to get two protein shakes in a day to keep protein intake high. We should be taking 1.5 times as much protein when on chemo so all is welcome and watch the carbs. So far i havent gained weight from steroids and have had minimal but manageable bone pain. Taking claritin generic for that for a few days after the expensive neulasta shot.
For those interested in joining the FB group, send me your email here and i will send in invite to the group. It is a secret group and will not come up in a FB search. Any of the members here can also add you via email too.
Special K, Thank you so much for chiming in to all us chemo newbies here with your experience. It is valuable to all of us. xoxo
Happy new year to all. Stay strong ladies and stay in touch with your chemo buds here because we all care about each other@!
bonnie
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So... Icing nails... You just keep icing during the actual Chemo? Or after?
Tea tree oil... you just put it on the nails? any time?
I guess I should read up on it!
I just had to have another IV drip today when I saw a doctor as a followup to my hospital stay. *sigh*
I think I wasn't taking enough electrolytes. And even the prescription anti-D pills aren't quite enough... so I'm taking otc stuff in addition to those (the docs said to do so). Hopefully all that will do the trick.
... Protein... I need to try and get more of that in. I think I'm feeling a bit better after 2 weeks from Chemo #1, so maybe I can recuperate enough to make it to Chemo #2...
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Everyone, Happy New Year!
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I started by putting the bags of frozen peas on feet and hands right as the pre-meds were almost done (I had Taxotere first, then Carboplatin, then Herceptin) and kept the ice on hands and feet, and held ice chips in my mouth, for the duration of the Taxotere, so about 45-60 mins. I brought 4 bags of frozen peas and an insulated tumbler of ice chips in my own cooler. I re-used the peas for all six infusions.
This is a personal choice, but I was reluctant to use tea tree oil due to its estrogenic properties. I was not comfortable using something estrogenic when I was so highly ER+, but everyone should make their own decisions about what they want to use for side effects during chemo.
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I'm pretty sure today (day 14) was my last day with hair. When I put the gel in it this morning, I had furry hands afterwards! Sigh... at least I got to finish out 2014 with hair. I got it cut short 2 weeks ago, but now I need to shave. Any tips on how to do this? We have clippers with a guard, but I've never used them. I imagine I'd want to go from front to back, but really have no idea what I'm doing.
I had my second chemo treatment today and felt worse afterwards than I did the first time. Trying to figure out if anything I did caused the difference. First time was later in the day (1 - 5) so afterwards I went out for a little pizza and then went to bed early. This time was AM (8 - 12) and I went to work for about 7 hours afterwards. I ate much lighter -- just a little soup, bread, apple, and cheese stick. I started getting a little headache and nausea in the afternoon, which made it hard to drink water. I could feel a slight burning in stomach and other areas. The doctor said I shouldn't experience any discomfort till Friday, and last time that was true. Which experience is more typical? Did the difference in eat/sleep patterns this time make a difference?
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