Starting Taxotere

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  • intothewoods
    intothewoods Member Posts: 449
    edited December 2017

    Wilma, I am so so sorry to hear about your side effects and the cobra issue, which is horrifying. I hope what Lynne has experienced gives you some hope that it will get better. We are rooting for you and with all you are dealing with it's so generous of you to hope our birthdays were good. Mine was mellow too and as you said, we have to keep on keeping on. We are having birthdays so good on us. Please let us know how the convo with your doc goes Thursday. I have thought about when/if Taxotere side effects get worse what I will want to do if it's still working- stick with it or ask to change.

    Lynne, I have often thought that living where there is actual weather would be nice but maybe not single digits :-) I would be happy if we got some darn rain!

    Iwrite, I smiled at your wish for nice fingernails and good taste buds. Thanks for that and for popping in.

    Love and good cheer to all!

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  • Lynne
    Lynne Member Posts: 641
    edited January 2018

    Lisa-As much as I hate this cold, but I could never live anywhere else. I've lived in my neighborhood for all but the first year I was married (our apt was a mile away). I didn't intend on buying a house in my old neighborhood, but the realtor showed us houses either out of our price range or not the kind of house we wanted (a 2 story, not a split or ranch), finally one in our price range and what we want, and it's back where I began. I asked my husband if he minded living in my old neighborhood (I still had 2 younger sisters living at home, we learned to lock our doors quickly!), and he said no and that he knew it was a great neighborhood. My Mom is 80, and lives a block and a half away (I can't see her house), and my youngest sister lives in between us. My sister can see both our houses from her's. I love the change of seasons. Winter is long, but not usually this cold, if it is, it usually only lasts a few days, not weeks.

    My white cell count was low this week. It always has gone up by chemo the following week, hopefully, it will go up again on Fri (my next chemo).

    I wish a Happy and Healthy New Year for all of you!!

    Hugs!

    Lynne

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  • intothewoods
    intothewoods Member Posts: 449
    edited January 2018

    Lynne,

    How wonderful to have everyone so close. With locked doors.

    I have a sister and brother I am close too about an hour away. My 84 y/o mother who has dementia lives with my sis. (She and my brother in law have been saints.) I would love them closer. But they would have to move by me. Haha.

    Sending a message to your blood cells to get it together by Friday.

    Happy New Year to all!

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  • Groovywilma
    Groovywilma Member Posts: 450
    edited January 2018

    Happy New Year to you all! I hope 2018 brings forth good health, good times, good food, and lots of quality time with loved ones! Thanks for your supportive responses to my drama. The transition to Cobra has been the biggest nightmare, and still not 100% settled. Very annoying! My chemo was canceled on the 28th, but luckily I was able to go in yesterday. Probably the first time I felt so happy to go in for chemo! Haha, I just don't like the idea of cancellations due to stupid cobra insurance issues, versus actual health reasons. I had good appointments with my doctor about the different side effects I'd been experiencing and we made some adjustments. One of the adjustments was having my chemo dose based on my weight prior to all the fluid retention instead of the weight that included an extra 25 lbs. of swelling in my legs. So I am hopeful that will be an improvement this time around. Also, I increased the lasix and have been getting rid of the fluid in my legs. That has made me feel better and a little less tired. As soon as my insurance gets settled I will be scheduling my scans and hoping for good results.

    Today is my cancerversary. On this day in 2011 my biopsy confirmed that I had cancer. It was a tearful and scary day. A few days later I started connecting the back and hip pain I was having the year before and was able to schedule a PET scan that, unfortunately, took me to the land of Stage IV metastatic breast cancer. Everyone here knows that devastation! So here I am now, 7 years into it. No one knows that the future holds, but I do know that I have an amazing support system that I could not have done this without. I have done a lot in the past 7 years and just try to keep in mind that even with metastatic cancer, I am LIVING. It's up to me to live my best life.

    Breastcancer.org has been an extremely useful tool, support, and calming source throughout these years. Thank you to everyone! So here we come 2018! Wishing the best for everyone in the new year!

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  • Lynne
    Lynne Member Posts: 641
    edited January 2018

    Yes Wilma, I hope that my cells get it together for Fri!

    I hope that mess with Cobra gets fixed for you soon! Luckily, I have my husband's insurance, and Medicare Part A (I could get part B, but my husband's insurance pays first, so they wouldn't be paying anything, and you have to pay for Part B). Happy Cancerversary! 7 years and 6 of that Stage 4. It's great that you are still living with cancer. I was first diagnosed on a routine mammogram (my 2nd) at 43, in 2005, 7 years later after back pain, and finally getting xrays then an MRI, it was in my spine and lungs and lymph nodes (not my breast), Stage 4, that was 5 years ago. I always say to everyone that I'm living with cancer not dying from it (unless they really don't get it, then I have to tell them that it will eventually get me in the end! Especially when they say that I can beat it!). Glad you got your chemo in! Hoping for postive results with your scans!!

    Happy and HEALTHY New year!

    Lynne

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  • intothewoods
    intothewoods Member Posts: 449
    edited January 2018

    Wilma, Happy Cancerversary. I hope your chemo goes well today and it's good to hear the fluid retention is better! Every time I think of dealing with cancer and insurance issues I just get so angry! It doesn't need to be this way. Hope your scan gets scheduled soon and you get good results.

    I am looking forward to getting to 7 years. This February will be my 4 year cancerversary. I worry that I am going through my treatment options quickly though. I was first diagnosed in 2007 with Stage 1 and then local recurrance to the chest wall and bone mets were discovered in 2014. Liver mets in 2016.

    Lynne, I really, really, really don't like it when people tell me I can beat it. Nothing I say in response feels right or good and I usually just says "thanks." I say I have metastatic breast cancer which is an even greater unknown it seems. Even when I explain that for all practical purposes it's the same as Stage 4 I don't think people get it and I feel like I'm just being negative if I explain more. Sometimes I will say we need a cure and leave it at that.

    We are here to enjoy today and I am grateful for insurance and that my most irritating side effect beside fatigue is now watery eyes!

    Hope the weekend is a good one for everyone.

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  • Groovywilma
    Groovywilma Member Posts: 450
    edited January 2018

    I've been dealing with the watery eyes too! Not a horrible thing to deal with, but annoying, and if I wear makeup, it washes it away. Oh well. I'd rather have that than something worse.

    One of the things I don't like to hear is: At least they caught it early! Ahhh... Well, for some people that might be the case. For me, the cancer was already advanced, so, no early catch for me! I know people try to say things to be kind and supportive, so I tend not to explain things to people in passing. It is hard enough trying to explain it when it really is very difficult to understand (the message out there just doesn't tell our story).

    Oh well. I am glad to have the support here! To vent, complain, compare, etc.! This is my 5th cycle with Taxotere (plus carboplatin). Still waiting to get approval for my scans to see how things are going.

    Lynne: Did your white blood cells cooperate and were you able to get your chemo today? Hope it went well!

    Have a great weekend!

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  • Lynne
    Lynne Member Posts: 641
    edited January 2018

    Wilma-Yes I was able to have chemo on Friday. My blood work though showed I was dehydrated, so I got a bag of saline too. I didn't feel like I was, and the dr didn't notice anything during the pre-exam. I don't mind having another bag up there. They just run it with the steroids and chemo, so I don't have to stay there any longer.

    Mine was caught early (originally in 2005) on my second ever routine mammogram, yet hear I am, Stage 4 for 5 1/2 years now. I am sick of everyone (including my husband) saying I will be here for a long time. I pray to God I am, but I know that eventually I will run out of options. I had asked my oncologist what the average life span was once mine came back metastatic.I told her I knew it was different for everyone, but I wanted to know. She said a year and a half if it's in your organs, 2 years if it's only in your bones. It's been in my lungs and spine since first being diagnosed, now in my liver and lots of other bones too. I feel that everyday is a gift at this point. I think I will ask people that say I can beat it, to not say that to me ever again. I've had it!

    This is my only support group I have ever been to, the past 12 1/2 years. Thank God for these boards, and all the survivors on here who support one another!

    Lynne

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  • intothewoods
    intothewoods Member Posts: 449
    edited January 2018

    Lynne, good to hear you had your treatment. Keep hydrating this week. The "catching it early" thing bothers me so much. Of course it's better early than late but as Wilma said, the message out there is completely lacking. People think early detection is a cure or even that we will be cured after treatment. There is no cure yet people! Geesh! Being honest with people and telling them not to say you will beat this is so brave! Maybe I can muster the courage too. I do have a good friend who is an adherent of all kinds of dietary/alternative theories but my spouse was able to tactfully let her know not to go there with me.

    Wilma, I hope this is the week the cobra issue gets resolved and we hear that you have your scan scheduled. As for watery eyes, I've found that hot compresses help. Good thing since my hobby is reading. The make-up can wash off but I have to be able to read. :-)

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  • Groovywilma
    Groovywilma Member Posts: 450
    edited January 2018

    Hey you Taxotere people! How are things going? I hope side effects are manageable and that your energy is good! I was finally able to get my Cobra insurance squared away last week. It was such a nightmare with them making so many mistakes. I'm sending out letters of complaint for the way things were handled and affected my treatment schedule. Ugh!

    This cycle has been better since my doctor and I discussed some adjustments. I actually feel like I have some energy for this week before my next cycle starts! My food still tastes weird a lot of the time. I'm keeping an eye on my nails because they're really bumpy and discolored and I don't want them coming off. How are your nails?

    I scheduled my PET scan! Got lucky and there was a cancellation this Friday. That way I can review results with my doctor when I see him next week. I hope my cough goes away before the scan.

    I hope you guys are doing well and feeling good. Take care!

    Wilma

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  • Lynne
    Lynne Member Posts: 641
    edited January 2018

    Hi Wilma,

    I just finished my "hell week" last week. They typical, stomach cramps, diarrhea, sore mouth, can't eat. I just write off that week, and don't plan anything then. My nail have actually grown a little this past month. There is a little white at the top. They are very bumpy, but I haven't lost any for a couple of months (I hope I didn't just jinx myself!). I'm not sure if I told you about Tea Tree Oil for the nails. That is what my oncologist suggested. I put it on my finger and toe nails most mornings after my shower.

    I'm glad you got your Cobra squared away. I've heard from a few people on here that they were having trouble with there's too.

    Glad this cycle went better for you! Good luck with your PET scan. I am having my every 3 month scans (CT/bone) next month.

    My husband is trying to get me to go on vacation. He keeps looking up deals online. We went to Jamaica in Oct and are going to Disney with our kids, grandkids, and my mother, in April. He told me that April will not be a vacation, and he needs a vacation. LOL He makes me crazy sometimes! I told him to wait until after my scans. I wouldn't mind doing a long weekend up in the mountains here. He could go skiing and I could hang out in the lodge reading a book. We shall see ...

    My sciatica (left) has been bugging me the past couple of days. Pain killers and muscle relaxers have helped. It still hurts, but not as bad. I think I'll attempt going out and picking up a few things today. I don't think I've driven in a couple of months!

    I hope everyone is feeling good! Have a great Tuesday!

    Lynne

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2018

    Hi Taxotere ladies,

    I’ve been on Taxotere (with Herceptin/Perjeta) since September but I just wanted to commiserate on the nail thing. Taxanes destroy my nails. Taxol did in 2014 and Taxotere is doing it now. My nails get infected with fungus and my fingers swell under. I soak them in warm water and Epsom salts. That causes my nails to drain gross, smelly fluid but then it feels much better. I do soaks at least twice a day. It really helps! Before I figured all this out back in 2014, my thumb swelled to literally twice it’s size.

    Aside from the nails, Taxotere is pretty easy for a chemo. Fatigue, slight nausea, heartburn that got solved by a rx antacid. I’m not NED but I’m stable and symptomless andbit surprisingly seems to be working on the brain mets!!

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  • intothewoods
    intothewoods Member Posts: 449
    edited January 2018

    Hello ladies,

    Wilma, so so happy to hear the Cobra issue is resolved and you are getting your scan on Friday. Such good news! Hope your scan results are great!

    Lynne, I am a big advocate of long weekends and one in the woods with a book would suit me perfectly. Do it! :-) And I'm with hubby-Disneyland would not be a vacation for me. I miss the old days with the E tickets and when there crowds weren't horrible.

    Bad- at usernames, my nails are hanging in. Mine grew a "nail" on top of the old and then that cracks and peels off and the nail is soft underneath and doesn't grow.

    My chemo weeks have been better. I have started using CBD oil and not sure if it does anything at all but my onc is on board. He said he has a lot of patients who say it helps. Might be helping. I can be a bit on the skeptical side.

    I saw my onc last week and we were both excited that I'm doing well on Taxotere. I'm like bad-at usernames- it's just the fatigue, food tasting off and acid reflux that was resolved with prilosec. Then yesterday his office called and wants me to repeat the tumor marker test in 4 weeks which has me worried they have spiked and it's stopped working. I emailed him to ask what's up but it looks kinda obvious to me. It scares me but today I'm okay and I guess that's the best way to deal.

    I appreciate all of you and always get a positive jolt when we check in. Hope everyone's day is good and

    Lisa

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  • Lynne
    Lynne Member Posts: 641
    edited January 2018

    Bad at-Luckily, my nail issues aren't as bad as yours (good to know what to do if they get that bad though, thanks!). A few of mine fell off with nails underneath, and broke a lot. Currently, they are just ridgy and have short tips. Slowly getting back to normal. Not breaking that much either.

    Lisa-Yes, I remember when Disney World first opened. I was in 7th grade, and we drove down there in a station wagon with us 4 daughters, towing a pop-up camper. We learned to make a pee stop when the huge gas tank, needed gas. Dad wouldn't stop until then! We stayed at the campground in Disney, and used those E tickets too. The crowds were not as bad back then, and it was just the Magic Kingdom then. My parents took each of their 10 grandchildren to Disney on trips of one, two, or 4 grandkids. I am trying to do the same. We currently have 3. I figure this will be one of the last trips with our entire family. He's right, it's a busy trip. His parents have left for the winter to FL, and their home is on a lake in the boonies, I say we go there for a weekend (or 2 or 3) and it's free! ;) I too take CBD oil. We have medical marjuana here, and I got it a couple of months ago. I'm not sure if it's working either (I got it for pain), but I take it. I'm going to ask for a lower THC dose in it though. I never took marijuana before, and it does make me loopy (the reason I hate the opiod pain meds!). I need to be able to function so I can drive. Good luck with the tumor markers redo. I hate when they don't answer you. I'm due for scans in Feb. I've been on Taxotere since May. My least favorite treatment so far. I feel lousy for a week (sometimes more) after chemo. I'm hoping the next one has less side effects (or not as bad ones). I miss my hair, eyebrows, and lashes too!

    We got about 4 inches of snow last night (into today). Only 3 months of winter left (it lasts longer here!). It's supposed to be in the 40s this weekend though (heat wave, it will melt it all).

    Hope everyone gets good results and has a great Wednesday!

    Lynne

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  • intothewoods
    intothewoods Member Posts: 449
    edited January 2018

    Lynne, you are great grandparents and I love your description of the wagon with pop up camper and pee stops. We are probably around the same age; we always had a wagon but no popup camper just a tent. I do forget that Disney can be wonderful with kids. My niece and nephew are grown now but we used to take them. For a time my nephew was afraid of the rides but he could track down a character like no one else. Lots of autographs :-)

    I used marijuana during radiation a few years back to take the edge off the pain and itching. I helped some. I've started again to help with sleep. I never had problems before but since I stopped working I have some trouble. It helps but I really miss hitting the pillow and being instantly out.

    I heard from my oncologist today and feel better that he's not rushing to change treatment based on just one set of numbers. Made sense. I'm due for a scan in February too.

    I miss my hair too! Except on the legs although not much of an issue during the winter.

    Have a wonderful Thursday everyone!

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  • Lynne
    Lynne Member Posts: 641
    edited January 2018

    Lisa- I agree, I miss my hair, but not on my legs (although I really don't get much on them anymore, only shave when I have somewhere special to go), under my arms (only get it on the non-radiated side), or those pesky chin hairs (hopefully, none of those come back! LOL). I just turned 56 in Dec. I'm not bothering with the autographs (I did it with my kids, and it takes up most of the day. If my son and daughter want to do it with their kids, go ahead, but I'm not hanging around, find us later.

    Wilma-How did you make out with your PET scan? I am due for my every 3 month CTs and Bone Scan Feb 13. The hospital called to schedule them for the beginning of March. I told her I was due in Feb. She scheduled it for then and said she would call the oncology office. Well, one of the receptionist called and said that the dr wanted scans in 4 or 5 weeks before I see her in March. I told her if I do it before the next time I see her (in 2 weeks), it's not even a week before the 3 month mark. She's suppose to get back to me today. I also told her that last time it was over 4 months, and I would like it on the 3 month mark this time, because I would rather know sooner, rather than later, if it's not working! They drive me crazy there sometimes. I know more of when I'm due for everything than they do! She's doing tumor markers on Friday, with my blood work before my chemo. Hopefully, those haven't gone up too much. I miss the days that they were only in the teens. I have had them go up in the 300's before, currently they are in the low 200s.

    Dealing with the roads being a sheet of ice here. Last night, over 100 accidents here in Manchester. Still icy, especially the side roads. The just sanded/salted our street an hour ago. It's been pouring rain since then, and is slowly starting to melt on my deck. It's suppose to get up to 47 here today.

    Hope everyone has a great Tuesday!

    Lynne

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  • Groovywilma
    Groovywilma Member Posts: 450
    edited January 2018

    Hi Everyone,

    I saw my doctor today and reviewed my PET scan from Friday. Good news and good results! It shows some small improvements! I'll take that over "no" improvements any day! I'm so happy to get the good news and so thankful to God. It does make the struggles with the side effect worth it when I know it is helping. Yay!!!

    The weird news is that my pinky finger nail is threatening to jump ship! It is hanging by a thread and for now I decided to keep the poor nail on and cover it with a band aid. I don't think that will last for long, and I suspect the other nails might have the same idea. It doesn't hurt and is not bleeding. I want to make sure I don't get an infection. I'm already using some of the good suggestions made here (good timing, Bad Username-- any more info you want to share about nail issues will be greatly appreciated!) and Lynne, I made sure to utilize my tea tree oil. I like using essential oils and have different ones to try out. At the very least they smell so wonderful and calming!

    Do you know what your dosage of taxotere is? I wasn't always asking at my infusions, but making a point now to find out and keep track for myself.

    I'm trying to think of what kind of "long weekend/ vacation" I want to do since I'm due for some kind of chemo break, even if only a short one. My energy has been pretty low and I can't walk very far without getting winded. But would definitely like a change of scenery that's low key. Hawaii is never a bad idea, especially flying from the West Coast. =)

    Lynne and Lisa: Wishing you both great results on your February scans, and manageable side effects from the treatment. Ugh, don't we all hate getting that run around with scheduling our needed appointments? My scan was more than 7 weeks after my doctor's orders because of my dumb Cobra/ insurance drama. And now I'm spending time getting reimbursed for some of the extra expenses I had during the time it showed I had no insurance (even though it was always meant to be retroactive to 12/1). Such a pain!

    But you guys made me think of The Happiest Place on Earth! I've never been to Disney World, but went many times to Disneyland since it's just 90 miles north of San Diego. Just be careful of the germs when you go and bring your hand sanitizer! Wash your hands a lot!

    I'll have to do some research into the CBD and how that could help me... Always good to know options!

    Have a great week!

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  • Groovywilma
    Groovywilma Member Posts: 450
    edited January 2018

    Oh, a little bit of venting that I forgot to add: Today was my 6th cycle of taxotere (plus carboplatin), which, for early stage people, is the end of treatment. So I was asked a number of times today if this was to be my last chemo? While I know that can be a very exciting time for some, it's far from the case for me! I just had to correct the nurses that nope, not my last, and if I'm lucky, I can stay on taxotere for a long while before needing to switch. Was kind of a sucky reminder. But that's OK, people need to know that we have different stories and different paths!


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  • Lynne
    Lynne Member Posts: 641
    edited January 2018

    Hi Wilma,

    Glad that you had great results! Always great when there are improvements!

    I clipped my dangling fingernails all the way to the edge and put bandaids on mine too, so I wouldn't snag them on anything. Mine are doing pretty well lately. No breakage, and even have some white showing at the tips. They are full of ridges though. The tea tree oil scent is very smelly, and not in a good way, but if it works, I'll put up with it.

    I don't know what the current dose of my Taxotere is, but at first it was an hour and a half infusion, after they dropped it due to the side effects, it is now an hour (just for the taxotere, the steroids are a half our and then I wait a half hour to start the taxotere).

    You should take a vacation! You deserve it, and it takes your mind off of all of this, if only for a little while! I've never been to Disneyland or CA, but I've been to Hawaii, once, with a 4 week old, and a 1 1/2 year old. We had friends stationed there (Air Force) and I was meeting up with my sister who was stationed in Okinawa (Navy). 12 hour flight for both of us. It was nice, but the Carribean is just as nice if not nicer (we only went to Oahu, not sure about the other islands), and only a 4-5 hr flight. Disney World is huge. I've been probably about 10 times. Last time I went with my 3 sisters and our Mom (no hubbys or kids). We had a blast. We are getting 2 mini vans (there are 11 of us) and will have 2 drivers for each, so if the grandkids or one of us adults are getting tired, we can go back without making everyone go back.

    You would think they would see that you are stage 4 on your chart. That stinks! I get asked when my chemo will be done by friends (and the medical assists!). I said when it stops working, and then I go onto the next one until they run out of options. I tell them this is what is keeping me alive. The longer I'm on each one, the longer I'll be alive. I was lucky with the first one, Faslodex, I was on for 1 1/2 years. My hips did not appreciate it (I'm a side sleeper and would be bruised for a few weeks after). I was on Xeloda for 2 1/2 years. This is my 6th treatment total in 5 1/2 years. The rest lasted 3-6 months. So far, I've been on this one 7 months (a little behind with the scans).

    Do you have a wheelchair? I got one a few months ago, and take it on vacation with me. That way, if I know I have a long walk or have to stand too long (my back becomes unbearable), I bring it. It's definitely coming with me to Disney!

    Have a great Wednesday!

    Lynne


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  • intothewoods
    intothewoods Member Posts: 449
    edited January 2018

    Hello!

    Wilma I'm so happy to hear about your good results! A little get away is definitely in order. Have you considered Palm Springs? I love the beauty of the desert and for me it's so quiet compared to LA. Sorry to hear about the nails. Mine have calmed down but like Lynne's, they are ridged and not growing. It is good to hear that yours isn't painful.

    I've had the "when-are-you-finished" question too and it's so hard! Likewise with the scheduling thing. It always happens that my Mo wants to see me in whatever # of weeks and then when I go to schedule is booked or on vacation. Or he'll order tumor marker tests for just before he wants to see me and then I discover the order isn't in for that time. We really do have to stay on top of them. It's a lot easier for me now that I'm not working though.

    My taste buds are on strike again this week and it's not my chemo week. Boo. But I have started with mindfulness meditation again and will stick with it now that I'm not working. It's helped me sleep really really well this week. Yea. My tumor markers had declined from the 600's to 200's. I think they are either not doing anything or going up though because MO wants to check them again the first week of Feb. I'm hoping

    I'll have to look up the current dosage too. When I landed in the hospital after my first dose it was lowered. My infusion lasts an hour.

    Best to you ladies,

    Lisa

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  • Lynne
    Lynne Member Posts: 641
    edited January 2018

    Lisa, glad your tumor markers have gone down. I hope you get good results in Feb too. I am having mine done tomorrow (I haven't had them done since Nov, the were a little higher than the last time, still in the 200s), when the do blood work, before my chemo. 8:30 appointment, I'm usually still in bed at that time. That means I have to get up at 6:30, so I can shower and put on the numbing cream for my port. UGH! I guess I will be taking a nap in the afternoon. I've been on my steroids since Tuesday. I slept 3 hours that night. Last night I got 6, YAY! We'll see what tonight brings. She did drop my dose from 2 4mg pills twice a day, to 1 twice a day, for 3 days before chemo and 2 days (it was 3) after. Hopefully, that will keep the thrush at bay so I can eat! She said the Taxotere is probably causing the diarrhea, so I'll still be taking the Imodium, and Prilosec for the acid reflux. As long as my hands and feet don't swell, and I don't end up in the hospital as I did with the first dose, I'm good! Hopefully, it helps! Sorry your taste buds are on strike again. Mine do that the week after chemo, I blame it on the Thrush, we'll see...I stopped working 3 years ago, right after the first treatment stopped working. I thought I only had a year and half (she told me that was the average life span, when I asked her), and it had already been a year and half I had been on the first treatment. I figured enjoy whatever life I had left with my family. Well it's been 5 1/2 years since being diagnosed stage 4, and I'm still here!

    Hope everyone is having a good day!

    Lynne


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  • intothewoods
    intothewoods Member Posts: 449
    edited January 2018

    Hi Lynne,

    Six hours sleep on the steroids is great! I loved hearing you are usually in bed at 8:30 because I am too and I still feel a little bit guilty/weird about it since I used to get up at an ungodly hour when I worked. I'm getting better at this not working thing though. I have to get up early for chemo too. I hope all goes well today and that your blood work is good. I guess I've learned not to get too worried about changes in tumor markers unless it is a trend. Like you, as long as I don't land in hospital and legs don't swell I'm good. The rest I can deal with (although the watery eyes are really really irritating)

    Does your hell week start right away or after a few days? I usually feel okay on the week end after chemo and the bad days kick in starting Monday.

    :-) Lisa


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  • Lynne
    Lynne Member Posts: 641
    edited January 2018

    Lisa-Only got 2 hrs sleep last night. I read my book until 11:30, was up at 1:30. Tried to go back to sleep. I got sleepy around 6, and of course I set my alarm for 6:30. I got a few extra winks when I got home around 12.

    Blood work was good. Chemo went fine. They won't have the tumor marker number back until Mon or Tues. I'll call them for it then. I'm on steroids for the next two days, so I feel ok through the weekend. It usually starts Monday, and lasts a week.

    My dosage for my steroid infusion of Decadron is 8mg 400ml, 15 min long. The Taxotere is 115mg, she said they cut it 20% from the original dose which lasted 1 1/2 hours, and now lasts 1 hr.

    Hope to get more sleep tonight! Come Monday, when I'm finally off the steroids, I'll sleep at least 10 hours! Can't wait! But of course that's when the stomach issues begin. Can't win!!

    Lynne

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  • Groovywilma
    Groovywilma Member Posts: 450
    edited February 2018

    Hi Everyone! How are you all feeling? I'm feeling like my hell week does not let up much and I'm tired much of the time. This time around the mouth sores came back, so that interfered with my already problematic eating (where everything tastes pretty blah). My next chemo already looms ahead a week from today. I feel pretty winded with very minor movements and activities. I was hoping to have some energy before starting the next round. Just wanted to check in with you guys here and see how you're doing; hopefully a lot better than I am! Which tumor marker test does your doc check? Mine checks my CA 27 29. Sometimes it's pretty indicative of what's going on in my body, but there are other times when it does not correlate at all. I've learned not to put too much focus on it.

    As for when my hell week starts: I get chemo on Tuesday, have the steroid high til the middle of Thursday, then it's a crash from there. I do have a wheelchair, but I hate using it because, of course, it reminds me of my limitations! I really need to look at it as a way to open up more that I can do outside of the house. It's just hard. What kind of physical activity (exercise?) are you guys doing? I probably should do more (some/ any!) but I get wiped out.

    OK, let me know what's going on with you guys! This is not easy, but it helps to check in with you guys going through the same treatments! I hope you're all doing OK!

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  • intothewoods
    intothewoods Member Posts: 449
    edited February 2018

    Hi ladies!

    Yes, it does help to check-in!!!

    Wilma, it gives me some comfort that your tumor markers are not always indicative of how things are going. Mine they went down after starting taxotere and then up again in Jan. My onc isn't concerned unless it's a trend and says progression is determined only with a scan. I know that but still it's disconcerting. We checked them last week so I'll be emailing him today. He tests CA-15. I LOVE that you are trying to re-frame the wheelchair. I can imagine how hard it is and send you tons of encouraging vibes. My hell week seems to last longer too, especially the fatigue and blah food taste. As far as exercise goes, I have always been an exerciser but it is much much less now. I do yoga and try to walk the dog as much as possible but I definitely feel the effects of the fatigue. When I force myself to get out and walk a bit it does help. Even if it's just down the block and back.

    I had a little scare this morning. I had chemo Friday and developed a fever yesterday. Still around today. Called my chemo nurse and she thinks it's from the Neupogen shots I give myself after Chemo. It has happened before but I also developed neutropenia after my first Taxotere and DO NOT want to be hospitalized again. Nurse said I can just watch it closely and don't have to go to ER now. Yea.

    Lynne, how are you? I checked my Taxotere dose- it's 93.6 mg. I take five oral doses of 8 mg Decadron- two does day before, tow day of and one day after. Thankfully I don't get much of a steroid high.

    I appreciate you ladies!

    Lisa

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  • Lynne
    Lynne Member Posts: 641
    edited February 2018

    Hi,

    My tumor marker test is breast cancer AG 27.29 (at least that's what it says on the online list they have). My number was 145 on my chemo day. Up from 136 in November. My highest was 352 a year ago though, and my lowest was 25 way back about 3 or 4 years ago.

    My hell week was last week. I was pretty dizzy all week. I fell on my butt on Monday, but it was a slow fall. I landed on the tile floor, but it didn't hurt. The diarrhea was the same. Mouth still got thrush. Food tasted blah all week like usual too. I have my chemo on Friday and take 3 days of steroids the day before chemo, have iv steroids the day of, and 2 days of steroids after. Done taking them on Sunday, hell week starts on Monday. I feel bad for at least a week. Of course this Monday I had my every 3 month scans (CTs and bone scan) and the barium I drink messes with me for a couple extra days of diarrhea. The scans looked good except for a new nodule in my pleura and tiny nodules in a lung. Also my T4 vertebra fracture is now 60% instead of 20%. I've had 4 compresssion fractures in my spine. There were 3 in the mid thoracic and 1 in my lowest lumbar, all were repaired with kyphoplasties. When they first saw this one, they sent me to the dr that repaired the others, and he said he can't do ones that high up. I'm not sure what they are going to do (if anything). I see the oncologist on Fri. I'm thinking she'll keep me on Taxotere for another 3 months (mixed feelings on that one!).

    Wilma-I really don't do any exercise. I go up and down the 13 steps to our 2nd floor (bedroom, shower, and laundry are up there), maybe 4 times a day. If I go shopping with my Mom, I'll push a cart around most of Walmart, or the grocery store. If I walk or stand too much, my spine kills me. I used to do chair (and standing) yoga once a week, but since I started chemo, I really don't want to catch anything, so I stopped going (I did love the instructor and people there. All cancer survivors, and the instructor did not charge us anything.). I'm pretty tired all the time too!

    Lisa-I hope your fever went away and stayed away from the hospital!

    Today we had a snow storm (can't really walk outside here in the winter between the snow and ice). We are in a lull right now, and have about 4 inches so far. It's not suppose to end until midnight though. They said 6-10 inches. Hopefully, this will be the last big storm for the season (although, we have had big storms the end of April beginning of May before!).

    I hope both of you are feeling better! Good luck on your next "hell weeks" (my next chemo is next Fri). Hugs!

    Lynne


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  • intothewoods
    intothewoods Member Posts: 449
    edited February 2018

    Hello ladies,

    So I have good news and confusion/concern. My tumor markers have gone up the last three tests and are now at 475 but the CT scan done this week showed "no convincing signs of progression" as my onc put it. When I last progressed in August it was in the 600's. We will stay with Taxotere for a couple more rounds. I have mixed feelings about it too. I want to get as long as possible out of each treatment (duh) but I am over these side effects which I realize are not that bad but still... I am also finding the bad week stretching into two weeks rather than the one. I trust my onc and like him a lot but I guess I'm not trusting the scan and it is the TM test that I probably should not be trusting. Damn cancer.

    Lynne, what did your doctor say? Are you sticking with Taxotere? How is the weather? Does your compression fracture cause you pain or lack of mobility? Glad your fall didn't injure you. Yikes!

    Hugs,

    Lisa

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  • Groovywilma
    Groovywilma Member Posts: 450
    edited February 2018

    Hi Lisa,

    Don't you hate it when you can't just enjoy the good news? We're supposed to NOT focus on the tumor markers, yet, we somehow know that it means something underneath it all. But for now I would focus on the scan results and squeeze out a few more rounds if you can. What comes after taxotere for you? I haven't asked that question yet. I hate the idea of limited options remaining... How are you feeling overall? Were you able to beat that fever you had a few weeks ago? How many neopogen shots do you give yourself? I have the Neulasta on-pro after my chemo and that seems to work out pretty great.

    I just did round 7 on Tuesday. Starting to crash and have long naps and starting with the various random side effects. I did have a good day today as far as finally being able to talk to a human at the SDI office who helped me clarify my state disability claim! It is so hard to get an actual person, but it finally happened today, so I can move forward with some other financial things I need to take care of.

    Side effects: Did I mention that I have lost three fingernails since my last chemo? They just slid off, and had a thin partial nail growing beneath it. The other nails also look like they are threatening to jump ship too! The swelling in my legs starting returning so I'm trying to keep them elevated. The diuretics help, but the swelling comes and goes. I did take the wheelchair out to go see a play last weekend which I really enjoyed! Unfortunately, being out and about without being able to elevate my legs wasn't so great, but I was glad to be out of the house for a few hours. Since I've been concerned about the swelling, my doctor referred me for an echo cardiogram to check things out. That won't be until after my next chemo because they didn't have any sooner appointments. I increased my procrit dosages to weekly to help keep my hemoglobins up. How are your hemoglobins/ RBC/ WBC, blood work overall? So much to monitor!!!

    My dosage of taxotere the last two cycles has been 130. I wonder if maybe I am much heavier than others? Maybe you can PM me your weight so I can compare. I feel like my dosage seems higher than yours, or also, my combo with carboplatin might increase my side effects. Who knows how all this works!!!

    Lynne: Sorry you fell last week! I hope it wasn't anything bad! How's the weather in your neck of the woods? When is that Disney trip for your family?

    I hope that everyone is still able to find the happy moments in life, the silver linings, and the little highlights of each day. Thanks for sharing your experiences and wishing you all comfort and freedom from pain! We can do this!!!


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  • Lynne
    Lynne Member Posts: 641
    edited February 2018

    I just came inside after sitting out in the sun, on my back deck, for an hour. So nice to have the sun on my face! It's 70 out there today! We broke a record for this day. 3 nights ago, we got 6 inches of snow! Tomorrow is suppose to be a high of 37, with a chance of snow every other day through the weekend. Yup, I live in New England. Wait 5 minutes, and the weather will change!

    Lisa-I'm glad you got good news on your scans, sorry about the crappy side effects you are getting from it though. My oncologist said the same thing, not to pay too much attention to the tumor markers, but how can we not? I am also staying on Taxotere, since my scans were good too. I've been on it since May, and am sick of it too. She said I could take a short break from it, since I've been on it for so long and she lowered my dose, since I am having neuropathy in my hands and feet. I can still do everything I want, but they really hurt by the end of the day. I had my chemo on Friday. It still is an hour for the Taxotere infusion, but less of a dose. I'm not sure what my dose is now, I forgot to ask. I'll ask next Fri when I see her. My compression fracture is bothering me off and on. It's around where my bra strap goes across my back. I'm trying a new strain of medical cannabis oil for pain. The previous one they had me try, gave me a high (which I don't want) and not enough pain relief. I'm taking this week off, since it is my "hell" week, and I get very dizzy, I don't need to be more dizzy. My fall last time was a slow one, and I landed softly on my butt on the tile floor. I was fine. No falls yet this week. I'll start it up the oil next week.

    Wilma-Glad you got to clarify your SDI. They got mine through in 4 weeks. She told me they rush it along because of the diagnosis. I'm not sure if my employer helped it along (since they were paying short term and now long term disability), but it was fast. I too have lost fingernails and toe nails. It's been a few months though, since it last happened, and my fingernails are very ridgy, but actually have tips on them now. Glad you got out of the house. That stinks about the swelling. I have some at the end of the day, in my lower legs, but not too bad. I usually have my feet up most of the day. Our Disney trip is the last week of April. We just paid for the 11 plane tickets, park tickets, and the house rental this weekend (YIKES!). We also reserved and paid for the limos to take us to Boston (direct flight, verses leaving from here). We just have the 2 mini van rentals to pay when we get there. We are having our children pay for their own Disney tickets (5 day pass), we will pay for the 3 grandchildren's. I also told them they have to buy their own food, souvenirs, whatever. I want to do a character meal for the kids, we'll pay for that. 2 months away! I am going to take a break from the chemo before this trip. I am due to have it the day before I leave, that's not happening. I will wait 2 weeks, and have it the Fri after I get back. I can't wait to be off this, even if it's a small break! My white cells are always down, 2 weeks after chemo, but they always come up the next week, in time for chemo. I was suppose to be put on Nuelasta, but they forgot to schedule me after my first chemo, and they lowered the dose because of the reaction I had, and they didn't notice until my 3rd treatment. She decided I was doing ok because they lowered the dose, and I never got it. My red cells have been a little low, but she wasn't concerned. They all go up by chemo day. Good luck with your echo cardiogram. I've had it done a couple of times (before I started my chemos), it's no big deal. I LOVE your last paragraph! I do try to find something to love each day. I usually do, but sometimes the days are hard.

    I hope everyone has a wonderful day! Hugs!

    Lynne

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  • Lynne
    Lynne Member Posts: 641
    edited February 2018

    Wilma-I forgot to tell you what my oncologist suggested for the next treatment, after I asked her. Gemcitabine (another iv chemo) was the one she suggested. Once Taxotere stops working for me though, I will go see the oncologist I see at Dana Farber in Boston. I always get a second opinion from her, to see if they both have the same idea. Only once, did they not match.

    Lynne

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