Starting Chemo July 2013
Comments
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Hi All,Donna How terrible for you and anyone else having a recurrance after all the surgery and chemo you've endured.Ugh!I got the half nuelasta dose yesterday and the agony is no better,so i'm assuming it's the taxol.Yah! Rambo,i'm so glad about your son's brca test results.I agree 2bluestars the nausia and foggy brain is gone,I'm trying to focus on that and not the pain.Dfwmom,it's such encouragement to hear your tumors shrinking,this chemo is kicking our butts so it's nice to know it's also kicking cancer's butt.Soriya,i lost around 20 pds but have gained 5 back on Taxol,it's nice to enjoy food again.Eat what you want girl.I forgot who asked about eyelashes but i'm glueing fake ones on,the best most natural look is arden active lashes with waterproof glue,they stay on for awhile and whatever works right.Hugs to all,Angela
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Oh man,i feel like i've been hit be a bus.Every muscle and joint aches,worse than the flu,and the headache like a vice!Angela
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Oh Angela, I was hoping you would catch a break this time. So sorry 😥 Praying for you girl.
Had my 2nd taxol today. Still tired from the benedryl so I'll post more later. -
Hi All,
Went to work all day getting caught up on work and waiting for the Taxol 3 bomb to arrive. At least with Tax there are 4 good days out of the 7. Always hate paying the TAX man.
Is anyone else receiving radiation during their taxol treatments? I really want to be finished with treatments by the end of the year to avoid the new insurance premium starting over again in January. This would mean I would have to start radiation after tax 8. I have a meeting with my radiologist tuesday to discuss it. I was just wondering if anyone else was planning on it or receiving it. My onco said he wouldn't recommend it, as it would be hard on my body. Are you kidding me? Like the AC or the TAXOL wasn't? He laughed and thought it was a fair point. Probably why he scheduled the appointment for me. LOL. I guess I will find out.
Have a great friday all. Praying as always, for minimum side effects for all of us.
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Lynn, a big congratulations on your sons BRCA!!!!!!!!! That puts a smile to my face. Now he can keep his ovaries.LOL!!
Just had my 3rd AC today. Can't wait until the 4th is done and then I switch to TH. I am hearing that there are less side effects with that?? Any advice on what to expect with weekly TH???
Like many if you I am working and trying to plan all this chemo around my work duties. I have signed up for Intermittent FMLA and will use a day tomorrow and hopefully feel well enough go go back on Monday.
This time around, I have to go back to the infusion center tomorrow for fluids. My blood pressure has been low along with lightheaded ness. They are suspecting I am getting dehydrated and so are trying to combat that. Any if you been "hydrated" . I have a feeling I will feel extremely bloated and so m planning on wearing my yoga pants . -
Hi Hanna, my radiologist refused to start radiation while I am on chemo. He said to wait till all the chemos are done.
Hi Lark, the benedryl is very drowsy right? I will sleep like a baby.
Hi Angela, same here. Had taxol on Mon, today is friday...and I am aching all over. So I am normal that I have a headache, I keep wondering if its the side effect or its the heat.
It is very very warm in Singapore. Easily 33 degrees daily.
Hugs to all... fight on
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Hi All,thanks lark i was hoping this taxol would be better,oh well,no such luck.Hannariggs,I'll be starting radiation 2 weeks after my last taxol.If you have a lumpectomy vs a mastectomy,you just have to.Being my cancer's in the left breast over the heart,my onco's recommending proton radiation to reduce damage to my heart.Sorry Cherri you're having a tough time with taxol too,the headache is all part of this nightmare,and you're right radiation has to come once chemo's done because it lowers counts too.Going to get in a hot bath with epson salts,my mom says this might help the aches.Hugs Angela
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Good morning everyone-
So yesterday when I went for my 2nd taxol my dr was surprised that my rbc and hemoglobbin hadnt improved at all. She was expecting a slow gradual increase since taxol isnt supposed to effect this like AC. I wasnt surprised because my fatigue has been horrible. She ordered an iron study which will take a couple of days I guess and then may do an iron infusion. She said I'm almost at the level of needing a blood transfusion which I'd rather avoid. Hoping we can get these counts up so I can function a little better. Shes worried that Im going to faint and fall down the steps or something. I am too.
We talked about the bone and muscle aches and I asked if I could skip the neulasta to see if that would reduce the aches. She agreed to let me try it since wbc are in the normal range. The risk is that if it falls too much I might have to delay the next chemo. Not sure if I made the right decision to forego the neulasta. Im second guessing myself now. But its so hard to deal with pain when I'm sooo tired. Once the fatigue is better I think I could deal with the pain if I have to have neulasta next time. But I'd also rather not delay treatment or end up getting sick. I also asked about getting a half dose and my dr refused. She said its a preloaded syringe and they will only give all or nothing. Any advice about whether I should or shouldn't try skipping the neulasta?
Dr also said its normal for the pain to pop up in different places with taxol. She looked at the little bumps on my back and thinks its just irritated from the skin being so dry. Hard to get moisturizer on the center of your back so now thats my DH's job.
I actually had radiation right after my lumpectomy so then had to delay chemo until my skin healed. Long story, but the bs initially didnt think the path report was right, didnt believe I could be triple negative, and didnt think I would need chemo. So while we were waiting for new path report and an appointment for second opinion we started rads. At least thats done, but now that I know more I wish we had started chemo earlier.
Angela my radiation was on the left breast too and no one mentioned proton rads. I was so overwhelmed at the time and I didnt know enough to ask about it. They did take great care with the mapping of the breast to avoid the heart, but who knows? Whats done is done now though.
Cherri- my dr said my headaches now are from low hemoglobbin. I get kind of a pulsing throbbing headache sometimes. May not be the same for you, just thought I'd mention to describe the kind of headache that you get to the dr and check your bloodwork so it might help determine the cause.
Hang in there July sisters. We're more than halfway through Sept and thats good progress. -
Hi Lark,that's so scary about your rbcs,i hope u don't have to get a transfusion,do you have a family member that can donate for you?you probably should have some blood ready and stored for you(you can do that).As far as the neulasta shot,that's bs they can't cut your dose,the nurse just squirted half of it out for me,maybe it's an insurance issue as i'll probably be charged for the whole dose.I found out i could cut my dose from another pt at my clinic that did it,so I'm not the only one it's been done for.I would much rather see what happens with a half dose first before completely cutting it out.I would call your doc out on this.Rest and feel better,Angela
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Wow!!! Taxol SEs crept up out of nowhere
First treatment was Wednesday.
Felt absolutely awesome this morning and even went for a walk! Now? Pains in my hips, legs, back, and - get this - my teeth!!! Crazy how different this pain is from the "please don't touch my skin" pain after AC. Humph.
So, Taxol veterans, how long does this sh$t (sorry) last and what helps???
-Lynn -
Lynn - I hear you! Luckily I found the SE's were the worst on days 3-5, then they got better. I found ibuprofen helped and making sure I drink plenty of water. On day 5 after my first T I slept the better part of the day! Not looking forward to my 2nd T next Friday! I just keep telling myself only 3 left! Lana
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Donna - thanks for sharing how you found your tumor! I wouldn't have even thought to include my lymph nodes as part of my self exam. I will make sure, when this is all done, that I go through this with my MO to find out exactly where I should be monitoring my remaining nodes. That's scary, especially considering that it's in a region likely not included in screening, like a mammo.
Cherri - I'm not doing AC + T as I originally stated in the OP. I changed MO's and I'm doing 6 cycles of cytoxan + taxotere.
Sorry all you Taxol ladies are suffering SEs and it's not easy like we were led to believe. It sounds like a lot of the pains and aches are very similar to mine, so I have to think it's the Taxotere causing most of it. I'm two weeks post-infusion for #3 and I'm still suffering muscle fatigue. I hope it doesn't continue to get much worse with my last 3 rounds. I have been taking the Dilaudid prescribed to me by my MO for those pains and the Neulasta bone pains, which overlap. My pains have been the worst night 4 going into day 5 and I need to take the pain killers to get any sleep, although 2 out of 3 cycles, I've had close to zero sleep that night, with or without the pain killers. I will also check with the MO about trying ibuprofen. I have a new MO next time out substituting for mine who is out on maternity leave for my next two cycles. I hope I like her.
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Hi All,Rambo,the only thing that works for me is hot packs to my back,painkillers(oxycodone plus advil),epsom salts in my bath,and just finding the best position possible.The headache is a pulsating,throbbing pain,i am going totally bald during the day with cold packs to my left temple.When hubby gets home i have to endure the wig or scarf,if you don't have to do that ice packs to your naked head works best.Hang in there my girls,we are strong and can take alot more than we thought.Hugs Angela
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Those ladies doing Taxol, I don't remember feeling pain, but I do remember exhaustion on my first round. The next three treatments weren't as bad. That's been my experience on 4 different chemo drugs now...the first was the worst and it got easier. It was as if my body was in shock and then got used to it. I don't know if any of you noticed that with AC. I mention this because I know you are afraid it's going to be this bad each time or possibly even worse but it could get better.
My muscles are a bit sore, but I wouldn't say I'm in pain. I just hate to read about so many of you that are in such pain. So unfair. My arms and legs feel restless. Im doing a 4 mile city hike in the morning tomorrow and swing dancing in the evening. I hope that I still have energy to dance and that when I go to bed my legs are tired in a good way and not this creepy crawly way.
I'm hopeful I can return to work next week. The process is slow and aggravating. It's pretty much consuming me with anxiety and anger and I need to let it go. -
Marsha try not to let the work thing upset you although I should talk. I would be right there in the anger and anxiety mode too. I really think it's just a liability concern maybe they just don't know how to handle it. Maybe the walk and dancing will help.
I'm sorry to hear of all suffering of my warrior sisters with the aches and pains. Taxol sounds similar to the taxotere. I love what Mellie said, that it's not easy like we were led to believe. I've been wondering why they downplay the experience of chemo. -
Hi All,
Hope your enjoying the beautiful fall weather! Still feeling the side effects of the taxol, but decided today instead of sitting inside and feeling sorry for myself I went out and mowed and pulled weeds. I didn't get much yard work done this year, and I love gardening. Sunshine felt great and it was good to be alive. May feel different tomorrow(lol), but for now I am grateful for the sunshine and being able to do one of the things I love. Taxol 4 is wednesday and it is starting to get depressing thinking about 8 more to come. Time is going quickly, yet still seems like along way to the finishline. Then, for those of us with radiation treatments another 6 weeks. OY! Sometimes I am just tired of being sick and tired. Most of us have had 4-5 months of treatments. Whats another 3 months? Over half way. Good luck to all of us.
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Hannariggs - that's my plan for tomorrow! Like you, I've neglected my yard and miss "playing in the dirt!"
Lana - with you on reminding myself of 3 to go!
Marsha - hope work goes well! I'm envious of your energy to hike and dance
I've been ok so far, but am wondering if I'll make it these last few weeks as I'm feeling the cumulative effects of treatment.
Lark - I've had increasingly lower hbg #s too. We've talked transfusion, but so far I've been able to hold off - though I wonder if last week (after last AC, before first Taxol) would have been better if I'd had one! I'm scared of tainted blood
Angela - tried hot packs, but found I really just needed to dose up on pain meds and sleep through the weekend!!!
No real neuropathy sensations so far - except my lips
Hope ALL of you firecrackers have a good week! -
Hi Ladies,
TCH #4 is tough, it seems like it getting harder n harder for me. My body ache here n there, maybe cus I rest too much...not moving around enough. Day four nothing taste good, but I able to eat IN n Out burger. Feeling guilty eating this stuff but this is the only thing I able to eat right now. :-(
Marsha, I don't kno how u have all this energy to go dancing n hiking. I love dancing, I used to do that every 3 months with my girlfriends. I missed those days!
Hugs to the rest of my ladies! Hang in there! -
Good morning everyone - i felt like i had the flu all weekend - so exhausted and achy. Im really struggling with depression at this point. I just laid in my bed most of the weekend. I thought about forcing myself to go for a short walk but once when I got up I almost fainted so i was afraid to go out. Less bone pain this time without the neulasta, but still had some last night and had to take pain meds to get to sleep. So it may not have been worth it to skip the neulasta. I'm so worried that I might have to get a transusion. Also noticed that some of my fingernails are sore. Weird, but I guess thats part of the neuropathy.
Angela, good idea about getting blood from family but they're all in Ohio and I'm in Pa. Hope your se's are letting up.
Marsha - thinking of you today and hoping everything works out with your job. Keep calm today so youre prepared to deal with them. I hope you had a great time dancing and that it got your mind off of work. I agree that with AC it seemed like my body adjusted as I went along. If I could just get a little energy I think I could manage the aches better.
Hannarigs, I hope to be able to get out soon to clean up the yard. Its been so beautiful here and i'm missing it. Hope you're able to continue doing what you love.
Sorlya- dont beat yourself up over what you eat. Do the best you can and just make sure you keep eating. Maybe you can have your own little dance party in the house today if you're not ready to go out! 💃 -
Lark-I know you may not feel like it, but make yourself get up and try to do something you like. Even if it is a small walk, it will make you feel better. I can relate to the depression and feeling lousy. Each day something falls out or I gain more weight. I feel crappy and you just want to pull the covers over your head. I still have times that I look at a previous photo or look in the mirror that I cry. But I played in the yard yesterday sweating and feeling like I was going to faint. It felt really great. I slept so well after that and today I am up and ready for work. I don't feel like it, but I refuse to give in at this point. I also signed up for the "feel good" class at our cancer center next week. I can't wait, sounds like a good time. We have to regain our lives and I am not wasting a single minute waiting to "feel" or "look" better. Feel better soon. You can, and have done it. Now its just a race to the finishline........HUGSSSSS
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Hannarigs - thanks for the encouragement. I was able to do that with AC, but at this point its more that I'm afraid of fainting because I'm so weak.
I just called the cancer center to check on the iron and b12 blood work they did last week. The doctor said its fine! Thats not what i wanted to hear. I would much prefer to do an iron infusion than a blood transfusion. She said my options are to wait for it to improve or do the blood transfusion. The nurse tried to reassure me that its much safer than it used to be and that it would definitely make me feel better. I'm not sure that I'm buying it. Any thoughts? Should I just deal with this and wait for the counts come up on their own or take the relief and the risk? -
Lark sorry you are feeling bad. I can't advise on the blood transfusion but like you I'd probably want to try the iron first. I had low hemoglobin before chemo and low during and I had fatigue during chemo but not before so how much will the transfusion help I wonder. But only you can judge how bad you feel and go ahead if you can't stand it. Sometimes when I couldn't do much we would go out to pick up food or go for an ice cream and it helped to get out of the house but not have to get out of the car or not for long.
P.S . Soriya there were days I said I was eating off the kids menu. Mac and cheese , burgers, PB sandwiches. I figure the chemo is taking care of the cancer right now. You can work on eating better when chemo is over. Now I have more energy and taste buds and it's easier. Don't beat yourself up.
Glad to see there are other gardeners. My flower beds are a mess of weeds and I don't think I'll get them clear before winter. I can only work about 15 minutes at a time and I used to go for hours so that is scary. Oh well maybe next year. -
Hi All,just when i thought the se's from the taxol were easing up,i was awake all night with restless leg syndrome,horrible.If i didn't kick my legs constantly it was torture,pacing back and forth all night,ativan didn't help,painkilers,nothing.Did anyone else get this?Will it happen tonight?Ugh,enough already.i know how you feel lark it's really easy to get depressed at this point.I'm taking the b vitamins and l-glut for neuropathy,is RLS related to neuropathy,God i hope not.Hugs All Angela
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Hi All,
Woke up and two of my toes are totally numb. They have been that way for a day now. Thought it might have been from working too much. I feel like a 90 year old woman. Strange sensation when you can't feel your feet. Eye brows are also starting to thin. I have been using Brian Joseph's and it seemed to be doing the job. Still have eye lashes for the moment. I let my eyebrows get really bushy, and am glad I did. I still have a thin line. Guess we will see what tax 4 brings.
Have any of you used aroma oils for treatment? I got some from a friend and used them this time. One in particular called "Healing oil". I have rubbed it on my feet daily and I don't know if it is a coicidence, but I have felt much better this last round of tax. Could be that my body is getting use to the poison too. Who knows? Maybe thats why my toes are numb. lol. Oh, and while putting the oils on my legs I find they look like bigfoot with all the hair. What the heck, no hair on your head, but bushy legs? Now there is a good look. Let see, I look, walk, and smell like an old person with bushy legs. Anyone want a date? lol
Tomorrow is tax 4 so half way through all of my treatments. Today is appt with radiologist to see if I can start radiation and take chemo. Not holding my breath. Have a great day all.....
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Hi Everyone!
I met my plastic surgeon and breast surgeon today. Didn't learn much from ps, so that was a waste of a co-pay! I'll see him in a month or two. He did say he can and would do te's at the time of my mastectomy if I wanted, but said it could be harder to heal since I still have to have radiation after. My breast surgeon said point blank, wait to heal from radiation. Less chance of infections and easier to heal. So more to think about.
The really good news I got today, bs did another ultra sound on cancer boob, and he said he couldn't find anything, consulted his notes to make sure he was in the right spot looked again and said the most wonderful words ever..".this is what we refer to as a COMPLETE PATHOLOGICAL RESPONSE"! Hot damn!!
Also I finish my last chemo on Oct 25th, so I was hoping to have surgery on Monday the 28th, but learned you have to wait about 4 weeks after chemo before surgery. Dang it. So on the upside, I'll be able to have Thanksgiving and enjoy it without the se's of chemo or being sore after surgery. :-)
Hannariggs, you nailed it. I keep thinking I "smell". I shower twice a day and still feel unclean. I'm always asking my hubby if I smell, but I think it's that "old person" smell. Hubby says it's all in my head. I hope so. I also asked my mo why I still have to shave my legs, yet have no hair on my head...so not fair!
Gearing up for dd taxol #2 on Friday. So far, after the first 5 days, I feel really normal. Not overly tired, no nasty taste in my mouth, no pain. So for me easier than ac, but the first 5 days...totally sucked with muscle pain and those dang zingers.
Hugs to everyone.
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Taxol has been nothing but a b*tch to me for the past two infusions (i'm on does dense... tow more to go). I've ben doing the penguin cold caps sine July and the past two infusions have done more damage on my hair (Head, eyebrow, and lashes) than i could imagine. makes me so angry. it has nothing to do with vanity - just feeling good (normalish) whien i look in the miror. Everday I lose a piece of myself - I hate it.
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Hi all, I'm so sorry for all of you having so many problems with the taxol. I also struggled with depression and couldn't even make myself get out of bed. I think there is a point though when you kind of turn a corner and can see a little light. I like the way someone called it cocooning. We're sort of protecting ourselves with that cocoon. But eventually you know that butterfly is gonna come out!
2bluestars, so excited for your good news! How great to know that all you went through gave you such a positive result. Sorry you have to wait for your surgery but this way you'll be all rested up and ready. After doing chemo, surgery won't seem so bad. : )
I am counting down all my "last" things. Last chemo was on Monday. They gave me a certificate and a t-shirt. My treatment center has a bell you ring when you're all done with chemo, so my son, daughter, DIL, MO nurse, and chemo nurse all came to the hallway to watch me ring the bell. I have a nice video of me ringing the heck out of that bell while everyone cheered! Then I started to walk towards the door with my family and I just stopped and broke down. I have only cried a few times during this whole thing but the sense of relief at being done with this part really overwhelmed me. Today I went in for my last Neulasta shot and now I'm gearing up for my last 2 weeks of side effects. I can't wait for all of you to get to this point and I thank everyone of you who has encouraged me along the way. Now I'm ready to get through radiation and see if I can find some kind of new normal for my life.
Fight on, Warriors! Eye of the tiger! -
Hello everyone ,
Taxol/ Herceptin wkly #3 is tomorrow , plenty of aches and pains heating pad has become my bff . Started walking on dreadmill , I go on twice a day and it feels great .
Jerigrace , so happy youre done !
2bluestars , great news !
Annie I know exactly how you feel , our lives are forever changed and vanity has nothing to do with it .
Hannarings , sorry youre feeling so horrible hope it gets better .
Wishing you all health and strength -
Hi All,Annie,yes ddtaxol is a nightmare,went to onco yesterday with very swollen fingers and some tingling,he said i've got the dreaded neuropathy.Between the restless legs,severe aches and pains,loss of eyelashes,feeling 100yrs old,now neuropathy.I too have 2 more to go and i want to quit now,but i refuse!I'm going to beat this b@#$%#.Stories like 2bluestars and jerigrace keep me going.We are strong warriors,all of us,and will pervail.Hugs Hannariggs and everyone else on this thread.Cancer has no chance with us.Angela
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Prevail,sorry
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