Chemo starting November 2018
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MB1 - I'm sorry you are having so much trouble with neuropathy. I was hoping the cryotherapy would be helpful. Sorry they are reducing your taco (you always make me smile with that taco word). I've had a carboplatin reduction too, probably more because my platelets drop than neuropathy, but I do have neuropathy. I can relate to the typing sensation, and I worry about how it will mess up my piano playing. What choice do you have though? I've read as the years go by it will get better, and I guess if we are alive to enjoy those years, it is something to have to deal with (along with a long list of other things). We watched an Olivia Newton-John Lifetime movie over the weekend and I told my husband, they need to improve the chemo side effects, but then I thought, if chemo keeps us alive, isn't that what matters?
I hope you are able to enjoy all your visitors that are coming, MB1. Congrats on being able to give up your dishes, someone else will surely love having them and will use them. You did the right thing. Have to hand it to you for your energy level, you rock! I wish I had that kind of energy, I have to take naps in the afternoon on days I don't work. I am SO TIRED all the time!
Dry skin. Oh yes. I trimmed my toenails this morning and they literally fell to pieces in dried up little bits. My face feels like a baby's bottom, it is so soft (and dry), but there is now a little line running down both sides of my mouth towards my chin, and I look like my age, 55. Grandma I am. That wasn't there before. I worry when people see me they will think, oh, poor Lisa, she looks so bad. She's so old.
We do meet some people we would have never met before at the infusion center, don't we? Cancer does not discriminate when picking victims, that is for sure. It can make you grateful or it can make you cry. Hugs to you MB1, you are making your way through all of this, and there is a light down there, and it will get a little bigger each time we go, one more treatment down. I am coming up on treatment #6, and I may get to say goodbye to Taxotere and Carboplatin, which I honestly will not miss one little bit (my hair should (please) grow back), but Herceptin and Perjeta - we will be friends for the next year. My stepmom really wants to ring that bell this next treatment, but I'm not done (and I don't want to ring it, but I will ring it for her). I will be one step closer though. Many hugs and please know - we understand. It is helpful to be able to talk to you super women too. Love, Lisa
P.S. MDoc - please let us know how you are doing when you can. I hope things are going well.
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MB1 - My feet are awful too
They are a peely, red, bruised mess. I hope your family time went well.A friend who struggles with constipation made a suggestion that has helped my constipation considerably - don't use the same thing for more than a couple days in a row. I've been rotating the senna, colace, dulcolax, and magnesium and it's been working pretty well. The miralax hands down just doesn't work for me. I drank that colonoscopy cleanse the other week and didn't go for 2 days. I was so bloated and my stomach hurt so bad I don't think I'll ever take miralax again.
The neuropathy is getting gradually worse by the day. I have moments where my hands are completely numb and I can't hold anything but it only lasts a little while and my feet get the pins and needles so bad I can't stand on them but again, it dissipates after a while. The last 3 fingers on my right hand stay numb all the time but aside from typing fast it doesn't really stop me from being able to do anything. If the numbness spreads to my thumb or index fingers then I might be in trouble. My toes are also completely numb. I nearly wiped out stepping into the shower the other day because the floor was slippery and I didn't have feeling in my toes to grip. I've been having my husband hold my hand since then while I look into options for grab bars. I had him laughing the other day when I made him promise that if I fell and broke a hip trying to get into the shower he had to dress me before calling for help.
My major gripes (other than neuropathy which sucks but I'm pretty much taking in my stride) are the fatigue that has me wishing I could sleep for a week and the hot flashes and night sweats that make sure I am never comfortable and don't get more than a couple hours sleep a night. I don't really feel bad in the way AC made me feel bad. It's more like an overall feeling of being incapable of comfort.
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I'm so sorry for those feeling poorly. My side effects are there but nothing compared to what I've been reading. It took me about two weeks to recover from the nausea of my 4th TCHP. The fatigue is what's doing me in. I feel like for a half day of activity during the third week, i need a full day to recover. Other days, i feel like I go from bed to couch to bed. I'm lucky that I'm able to take off work and only have my cats and myself to care for. I haven't cooked at all until last week. I made a pot of soup. Ate it the one day and haven't touched it since. You all that are holding down your jobs and family are so strong. I think I'd be a basket case.Saw my oncologist this morning before tomorrow's infusion. I had my follow up MUGA (heart scan every three months) and I've dropped 20%. We're thinking (and hoping) that it's just because I have been training in the last 3.5 months. Even where I'm at now, he thought it probabably measured better than his. I have to have another before my next infusion in three weeks. If it drops too much, I'll have to go off the Herceptin for a bit.
We're almost done ladies. At least this part.
Sabrina and Tristan give purrs and kisses. Picture may have posted twice, or not at all lol
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oh the kitty snuggles are making my day, thank you! Keep that MUGA scan up, my friend, hugs to you and those kitties! Lisa
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Good morning all! It's cold and snowy here today. We had to leave extra early to get up to Baltimore for my chemo to beat the weather just for the oncologist to decide she wants to skip this week because of the progression of the neuropathy so we'll try again next week. I'm actually not all that bothered, I feel like I could use a break and it wasn't a wasted drive because this was my scheduled week to meet with the MO since I only see her once a month on the Taxol.
I have an abdominal CT scheduled for tomorrow so I stopped by the Advanced Radiology to pick up the barium contrast and the bottles are huge! I know these are some pretty first world problems to have but blech!
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Hazel-Nut you'll be surprised at how much better you'll feel getting a 1 week break. For me the chemo fog lifted and I became so mentally clear... not perfect but tons better than I was. But beware the runs and the nausea may return... they did with me. I so hate morning sickness..... 1st thing out of bed I have to go to the fridge and get something to drink to try and hold it back. I can't eat 1st thing and it's more like brunch now. Good luck with the CT I pray it's all good.
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I have had zero nausea on taxol and the opposite of you with bathroom problems - extremely constipated instead of diarrhea. My major problems have been the fatigue and neuropathy. I wouldn't mind getting a break from the chemo brain though...
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Nanette, I'm sorry you are having trouble with morning sickness. I hope that doesn't last a long time. Hazel-Nut - good for you for not letting this get you down. I had treatment delayed because of platelets and look up to folks like you. Good luck with the CT.
My co-workers have t-shirts that have Team Lisa on them (complete with kitty cats) and they're all wearing them next week for my last chemo. I hate getting emotional, but this will do it to me. Someone told me, if you hold your breath, you can't cry. I'm going to try that. Hope you ladies get a chemo brain break. I am hoping I can get past all this fatigue, I have radiation to look forward to after surgery. I've heard not to wear aluminum deodorant - and camisole bra cup things are the way to go.
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Yesterday was to be my last chemo; however, my platelets were just to low and it was a hard NO from my MO. So, I had premeds minus nausea stuff and my H&P. Final chemo moved to Tuesday next week as long as platelets look good. I was so torn and anxious about yesterday, arguing with myself about sitting there to get sick again and now, I am so disappointed that I almost can't stand it. I am glad to be getting a break though, I feel pretty good today. I can't help but wonder if there will be a shoe that drops with the HP on board.....
There are so many twists and turns on this crazy ride of BC! I am glad to not be traveling it alone! Hope everything is going great for y'all!
F
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Hugs Frmthahart. Know that my platelets went from 50,000 to 90,000 in one week. You will be back on track in no time. I get my blood checked now the day before treatment, so my husband doesn't take off work and I get turned down, we know ahead of time. You still have ONE left! Way to go!!! Hugs xxxxx
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Ran across this poem just now. The Lydia Project will send you a journal and a free gift, if you write them a note about your cancer. This poem reflects my heart this morning, hope you don't mind my sharing.
I Am A Cancer Patient
I am a cancer patient.
I am also a mother, a wife, a daughter, a friend.
I have fears and uncertainty,
and days of boundless joy and deep emotion.
I am a cancer patient.
I have a career and goals and a past filled with memories.
I have days I wonder who will care for my children if I am gone-
And days I am certain I will live forever.
I am a cancer patient.
I am also a survivor, an inspiration, an advocate.
I have hope and courage
As well as nights of restless sleep
and days of fierce doubt and deep rage.
I am a cancer patient.
I am experienced in enduring medical procedures and treatments
and feeling exposed to total strangers in whose hands I lay my future.
I have moments of complete confusion and some of total understanding.
I am a cancer patient.
I am skilled at disguising my physical signs of illness
With wigs and hats and makeup and smiles-
But do not be fooled. . . I am afraid.
I am a cancer patient.
I enjoy peaceful moments amidst the uncertainty that is my life.
I am viewed with pity, with awe, and a certain misunderstanding
By those who have not shared my journey.
I am a cancer patient.
And I am blessed because I live life larger than most
because I am acutely aware of life�s preciousness.
I am a product of a tenuous and difficult challenge.
And I am most thankful for the side effects that have helped me become
A better mother, a wife, a daughter, and a friend.�1998 Amy Breitmann. All rights reserved.
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So I had my abdominal CT last week and learned the hard way that I'm allergic to the contrast dye. It was a very itchy day for me! The GI sent me a message through the online chart with the results. So far looks like gallstones but at the end of the message threw in a quick line about there also being a sclerotic lesion on my hip! Ugh. I quickly copied and pasted that message to my oncologist who wasn't able to see the results yet. I know it's probably fine but you know all the places your head goes once you have cancer. Of course my weekend was full of anxiety. Hopefully I'll hear more details by tomorrow. Do you think we'll ever get to the point where we can be blasé about scans?
Upper endoscopy is tomorrow and the only thing I'm really dreading about that is having to spend all morning without drinking. I can do the no eating just fine but I'm so thirsty these days that spending 4 hours awake without drinking water will be really hard for me. I think I'll wake up extra early and just drink as much as I can before the cutoff time and maybe that will help.
Skipping last weeks taxol seems to have really helped. The neuropathy pain is probably half of what it was. I sent a message to the oncologist letting her know. Hopefully we'll be good to resume this week.
I have been eating so much junk lately. Every time I see cookies or brownies or chips my brain has one of these moments:
Everything tasted like crap on AC. Now on taxol it's like I'm trying to make up for lost time. I need to find my food willpower.
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Hazel-Nut, good luck with your upper endoscopy tomorrow. Have a final drink before your cut-off time to try and keep from getting thirsty. Think positive thoughts (easy to say, and I understand those tricks your mind plays, do not let that happen if you can help it). One step closer, as our friend says, let that be the theme. You will be in my thoughts and prayers Tuesday. Good luck!! I get my platelets checked Tuesday to see if I can have my last TCHP treatment and meet with my surgeon. Been drinking that POM (pomegranate) juice. Best of luck to everyone this week, we can do this!
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My platelets are too low again. Doctor offered to give me treatment without carboplatin (last treatment) or wait a week. It's tempting, but we shall wait a week. I remember someone on here not letting the delay get to them - so I shall follow that lead and just be patient. A week will come soon enough. Hazel-Nut - you get some good news today, okay! Hugs to everyone.
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Greetings,
Just found this forum and wish I had found it earlier! I was diagnosed in October with Invasive Ductal Carcinoma and had a lumpectomy.
I started AC November 27, and am currently halfway through 12 weekly infusions of Taxol.
I am struggling a bit more than I expected with the Taxol. Nausea is kept under control with a motion sickness patch but the fatigue is incredible. I do have neuropathy in the toes of both feet and in my left leg. The infusion nurse recommended acupuncture, and that seems to be helping. Leg is much better and the toes are marginally better - certainly nothing is worse so I’ll take that!
In any case it is nice to “meet” you all though I wish it were under better circumstances.
Fight on!!
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Welcome ACJ! We're so sorry for the reasons that bring you here, but we're really glad you've found our Community!
We know you'll find this place an extremely helpful source of information, advice, and support while you navigate your treatment and recovery.
We look forward to hearing more from you soon!
--The Mods
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Hi all!
ACJ...welcome to our wonderful and supportive group!!MissouriCatLady.. you have a great attitude about the slight delay...go with the flow and don't get upset! Also, thanks for sharing the poem!!
Hazel...Its interesting that you mention junk food. In the last few months, I ate more bagels than I have in the last ten years! And the number on my scale proves it! Now that chemo is over, I am going back to my weight watcher type lifestyle. I need to get back in control before this bagel issue is out of control!!!!!!!!!!!
Today is three weeks since my last treatment and I am just starting to get my energy level back. I am meeting with the radiologist tomorrow and I think radiation will begin in next week or two!
Be well everyone!!
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Welcome ACJ! I think we have several ladies taking Taxol. I have neuropathy too, fingers and toes, on my HCTP. You had your lumpectomy first, and I'm having mine after chemo, if I can ever finish it up! Trying not to be frustrated in my delay today. It is nice to have you with us and yes, fight on!
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Flower216, thank you. One of the women I work with, her niece recently had radiation. She shared a few things with me and I would like to share with you. She said not to use deodorant that has aluminum in it (I didn't even know deodorant might have aluminum in it). She bought a camisole with a bra built in it to wear to work (this is something I plan to get). Her radiology office gave her some Aquaphor lotion and she used the makeup sponges to apply lotion. I guess we will continue to use lotion, and drink a lot of water. There are women I work with that will share tips, and there are women that won't share much, just tell me everyone is different. Everyone is different, and I like to get tips to share, hope you don't mind. Congrats, Flower, on finishing up. My surgeon asked me to wait about 3 weeks after treatment to have surgery, once I feel better, guess he is right. Good luck to you!
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Welcome AJC!
Flower - I'm glad but also sorry to not be alone with my comfort eating!
The oncologist sent me a message today saying she has decided to hold chemo this week as well. I'd like to get this show on the road again so I can get done! The neuropathy is feeling a lot better and I just got the results from my lab work this morning and my liver numbers are improving so I guess the break is worth it. Hopefully the rest of the infusions will go off without a hitch.
Endoscopy wasn't too bad. My GI doctor is dreamy cute so I actually wasn't sorry to see him at all
. See all of you nearing the finish line has given me the chemo equivalent of cabin fever lol. I'm anxious to be done with this and I'd like to be done in time to enjoy the summer.
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Hazel-Nut sorry to hear she's holding you but then you've had some positive improvements. I noticed my neuropathy getting better a little now that my weekly taxol is finished. My husband kissed me this morning and I could actually feel his lips on the left side of my mouth (I have neuropathy in and on my mouth!) And all this in 1 week... leaves me hoping things will get better. Enjoy spring... for me it's my favorite season as things spring to life and the beauty of the world returns! I'm sure you'll be done well before summer and feeling well enough to do all you want. My psychiatrist made me promise that if I couldn't get outside to at least sit in front of a sunny window each day. It has helped with the blues from being trapped in and not being able to enjoy outside.
Sending ((hugs)) to you my dear
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Hazel Nut - I sure hope you get to finish soon!! To be sooooo close and then being told to wait. Oh my! However, it’s better to err on the side of caution.
It’s nice to say that chemo is finished but I’m living through the last round of fun. Funny feeling fingers (and finger nails), stomach issues, bathroom issues, itchy feelings, and new this round my legs feeling like there are 50 pound weights attached. The part that gets me through is constantly saying “last one last one.” Please tell me the hot flashes get better.
I met the plastic surgeon. He put a lot of fears to rest (and was the second doctor that told me that I need stop googling.) I will be getting implants which honestly the surgery sounds better than what I was reading about the Flap stuff (hence the stop googling remark). My surgeon doesn’t believe in taking working muscle and tissue to put somewhere else in my body - especially if I might need it at a later time. He also likes to wait at least 6 weeks after the last chemo treatment to give my body time to recover. I appreciate that. I’ll meet with my surgeon next week for more updates. I’m grateful that the 2 doctors talk to each other.
I don’t have the BRACA gene I have the ATM mutation which is probably why I developed breast cancer to begin with. The gene makes it highly likely that my body will produce breast cancer again. The gene also increases my chances to develop pancreatic cancer. So the journey continues.
I just saw a Neulasta commercial. Get your day back. Haha. NO MORE NEULASTA!!! So super excited about that. (Even as I struggle to eat!!)
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Here's a little hair update. This is almost 4 weeks of growth. I'll probably give it another week or two and then do a buzz cut just to get rid of the white fluff and get it all even. My hair grows so fast it could be considered my super power and I'm glad chemo didn't change that. The longest bits aren't almost an inch long but I wish it would fill in more. Looking kinda sparse at the moment. Also- you can kinda see the janky way my eyebrows fell out. I've got half an eyebrow on the left but a full one on the right. It'd almost be better if I just shaved the damn things off. Also, all of my eyelashes on the left fell out and none on the right. I'm hilariously lopsided
My 2 week chemo break has caused enough side effects to resolve that I'm getting a taste of what it will be like to be on the other side and now they'll have to drag me in to that chemo chair kicking and screaming next week. I haven't had a nose bleed in 3 days and its been bliss. It really is the little things in life lol
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Hi all!
Hazel....your hair looks great!! Was your scalp itchy right before your hair began to grow in? I am walking around scratching my head-you would think I have fleas-but I hope its a good sign of hair to come!
MDoc..my side effects from my last chemo lingered (and some are still lingering) around awhile. My stomach just got back to normal, but my fingers still feel funny (dr said that can take a couple of months to get back to normal), and my legs still feel very heavy but I am trying to walk and going to go to a Zumba class tonight but I will modify everything). I still need extra sleep everyday.
MCatLady….I met with my radiation oncologist yesterday and had my simulation. The nurse also mentioned about deodorant without aluminum, she suggested Toms but my breast surgeon recommended Native, which works better for me. She also mentioned the cami but said start with a soft bra and wait to see if the cami is needed. She also gave me a folder with a bunch of papers about skin care, etc that I still need to read. I start radiation a week from this coming Monday.
Nanette..you are so right about the spring and going for walks. Hasn't the weather been nice in Florida? Unfortunately..snow is coming here again. It was a pretty good winter, but now march we get snow!!! UGH!
Be well everyone!
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I wrote something here several days ago - only to later find that it didn't submit. I know it is user error. I didn't have the energy to try to type it again.
MCLady - I am sorry that you have been delayed again! I know it is frustrating! Your words got me through it when I was delayed. Please know that I am praying your numbers will be good so you can get your last chemo done.
Welcome AJC!
Hazel - Your hair looks great! I hope to see more than the light white fuzz on my head soon. I am glad that your numbers and neuropathy are improving. Hopefully, you will be done with delays. I am also lopsided with the eyebrows. My left is just about gone and my right is just starting to thin. I look so strange, but I am not willing to pull even one hair out.
Flower - keep us posted on rads. I am in the process of setting up my initial appointment and feel like there is a whole new learning curve.
I was able to get Round 6/6 Tuesday. The additional week brought my platelets up into normal range. I am ssssoooo glad to have the last strong chemo DONE!! There was no fanfare or bell, no real celebration. I did get a hug from my infusion nurse.
My daughter got her tonsils out yesterday and I am not in much shape to help nurse her. I talked my older daughter into coming home from college to play nurse for her sister. She had her tonsils out and will be able to commiserate. I still feel really guilty and have been pushing myself to be there for her anyway. Makes me feel like I am terrible Mom because I just want to curl up and keep my stomach from revolting.
Hope you all are having more good days than bad. Keep moving one step closer!
F
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Hazel-Nut - the hair looks awesome! Gives me hope!
Flower216 - Good luck with the radiation and please keep us posted. Mine is 6 weeks after surgery, and I have time to listen and learn. Hope it all goes well for you!
Mdoc - Here is to your appetite, I hope it comes back quickly. Your Neulasta comment made me laugh, amen sister! Well, I have one more shot, amen sister in a week! I hope I get that shot this next week!
Nanette - soak up the sunshine! One day, the snow and cold, hopefully, will be part of the past, although we may get 2-6 inches on Sunday. I've read getting out in nature has multiple benefits!
ACJ - Keep fighting and keep us posted. We are strong in numbers!
Frmthahart - You're done! Virtual hug, my friend, congratulations to you! My stepmom wants to ring the bell and I'll let her, if it makes her feel better. One step closer! Keep us posted on radiation please, I am trying to prepare, think it may be May for me, they make me wait 6 weeks after surgery, and surgery may be the end of March. I'm a little scared. Hugs to your daughters for helping you. When I think I can't get through this, I know other women have a rougher time than I do, and my hugs to you.
I have a year of Herceptin and maybe Perjeta after surgery and radiation, so I still get to come back, but I won't really miss you Taxotere or carboplatin. I am thankful though, for those drugs that saved my life, even though I don't think I'd like to go back and re-do this journey again. Hazel-Nut - keep the hair photos coming please. I hope to have my last treatment next week and see a little hair in the spring. I hope my fingernails came make it, they are all turning colors that look like I've painted them. Sing along with Britney Spears - hit me baby one more time! You ladies rock - keep it up! Lisa
P.S. Running Cats - hug your furballs! Our pets love us without hair, no problem!
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Frmthahart...congrats on finishing treatment!!!!!!!! And best of luck to your daughter. Please don't feel guilty. Sounds like your daughter is in good hands, and she needs you to care for yourself and get stronger!!
Wow, is my head itchy!! I sure hope that's a good sign!!!
Feel good everyone!
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Frmthaheart I'm glad your older daughter will come home to help out. That way you can take care of you and maybe get some pampering too!!
Hazel-Nut your hair is darker than mine...it's coming in snow white all over and is longer on the top than the rest! Yours looks great!!
Flowers mine isn't itchy at all but it does feel good just to lighty scratch it. DH says all of my hair follicles look like bumps 8( I do have a small spot of psoriasis on the very top that I have to put my prescription cream on.
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The 25% reduction in the taco has made all the difference in the world in the fatigue (still there but I have some energy now at least by Saturday evening instead of Tuesday) and the neuropathy. The hand, foot mouth syndrome is still present and I have joint pain, but having energy back is amazing. I have 2 more tacos left. Then 4-6 week recovery exchange surgery to implant (prob silicone gummy) and nipple removal., Need to coordinate it with both plastic and breast surgeons schedules and figure out which hospital. Outpatient surgery tho so no overnights!! Then 4-6 week recovery from that and into radiation. I will prob meet with rad onco again about 3 weeks after surgery for the measurements. I have one more fill towards the end of March with the plastic surgeon before surgery. Have a 6 month follow up with the original breast surgeon - seems crazy - next month in April. So weird. Time has flown for sure. Med onco has indicated I am still a good candidate for this clinical trial for AI and iBrance use for locally advanced (lymph node) but not metastatic bc that is hormone positive and her2 negative. Should be interesting.
My best friend from Oregon left about 2pm to head back home after a whole week here. It was amazing to see her and catch up in person. I'm going to see an Irish dance group this evening with 2 of my sisters and my mom. And my oldest sister is due in from Connecticut tomorrow for 3-4 days. Hopefully her trip down is uneventful but I fear she is going to run into the crazy snow squall that's going to dump 4-7 inches us like. Ugh. Safe travels everyone and enjoy the rest of your weekend. Xxoo MB1
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One more note - I used both Tom's deoderant and Native and found Native to be more useful in my case. The Tom's was like a gel deoderant and unfortunately stained some T-shirts. The Native is more like a solid (not gel) and I've used and like the unscented, cotton and Lily, and eucalyptus and mint scents and loved them all. Previously being a degree motion sense girl, the native rocks. And their sales folks are HILARIOUS. Quite the pick me up in terms of an email when you place your order. Waiting in this beautiful old Frederick, MD theater waiting for the Irish dance show to start.
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