Anyone starting chemo August 2016?
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Senstive- I got a good laugh about doing stuff around the house, but getting lazy! I get that! I'm not working- it was a heavy suggestion because of what I did involved lots of public contact. (um...no I wasn't a street walker lol). I have lots of projects in my head but they still have yet to get done. Glad you're feeling pretty good so far.
KZ1966- looking forward to hearing about a smooth 2nd infusion. I haven't heard anything about the Glutamine.
Oh- I had my follow up yesterday with the NP, but to my happy surprise my MO walked in! I just love her lol- I think almost everyone falls in love with their oncologist! She was awesome, decided since I had messaged her some questions that she'd come in and answer them herself. Ok! She did examine and measure my mass (it's not one tumor- there were like several on top of each other- so they call it one mass)...she feels it has shrunk a bit after that first treatment (question one answered- how do you know this is working?!). She cautioned that won't necessarily happen each time, but hey- I'll take it. She let me know after the 3rd treatment I'll get an ultrasound so they can see what's happening. She felt I was tolerating the chemo well, she was super positive which is nice. I did ask her if I was considered triple negative- no. I had a mild to moderate hit on the progesterone (I didn't know if it was high enough to "count")- so not triple. I had a question about why this chemo regimen. Because I have a lot of negativity (my words not hers lol), and I had a high KI67, she chose these drugs. She wanted to stay away from the Adriamycin because of some of the side affects, but "keeping it in her back pocket" in case she needs it.
I also met with the genetic counseling and did the test. My mom had done the testing/counseling in 2012, but they've added so many new things to the panel it's good for me to do (esp since I have a 13 year old girl).
Next treatment in a week. I'm feeling like KZ1966- my scalp hurts.
Wishing everyone a great day......
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Kathie,ordering bangs isn't crazy at all! I have a halo that is bald on top and just has hair that would come out the bottom of a hat or scarf.... You do whatever you need to feel a bit like "you" through this process... And rock it!
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Hello all. I just had labs again this morning (week 2 after 1st round of CT). WBC count still below 1 and neutrophils down to .12. Apparently, Neulasta doesn't work for me (could have fooled me with all the bone pain!!). MO is considering Nuepogen. Anyone here using that instead of Neulasta? How do the side effects compare? I'm hoping that counts are up before next weeks treatment. NP was hopeful because my monocytes were up and she said those are usually the first to rebound. This surprised me because aside from a migraine a couple days ago and thrush (it is cleared up now), I am actually feeling pretty good. Keeping fingers crossed. Still waiting for liver tests to come back to see if they rebounded. Currently taking no medications except probiotic to give liver a rest. Also, lots of water! Hoping we can manage this better with my next round.
A tip that I thought I'd share. If anyone has a picc line, I am using the CareAline sleeve and highly recommend it. It is much nicer than the fraying "sock" they give you at the clinic. It has a nice hole to stick the tubes through and covers everything up while keeping pressure off your skin and is very soft. Also they look nicer. My NP asked me today about it and was going to recommend that they start carrying them to give to their patients who require picc lines. It was $20.
Hope everyone is having a happy healthy week!
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Hi all. Today is a MUCH better day! Wound up with quite a bit of nausea yesterday which surprised me. Took a compazine and then another one this morning. Just a bad head ache last night. Today feel great and am going out to run errands and feel a little more alive!
Lori: I'm so sorry about your mom. Had she just fallen and not had the strength to get up? IF she returns home (I know it's doubtful) you might look into one of those alert necklaces that she could just push a button and have you or emergency notified. I've know a couple of people who had them and they really are a life saver!
Kelly, so glad you got answers to your questions. Sorry about your scalp. Mine is still pretty sensitive. I find by evening I can't stand to have anything around my head. Still have eyebrows and eyelashes though so that's encouraging.
Kechla, can't believe you went through the neulasta pain for nothing. I think there is someone here with neupogen. They use that a lot in Canada as they don't usually give neulasta there. A friend here also had it several yeas ago before neulasta became so prevalent. It is a series of 7 small injections that you give yourself, don't hurt and seem to have the same effect on WBC. Hopefully that will work for you! Looking at the bruises on my hand and arm, I'm wondering if they will keep trying to just use veins.
Kathie, I agree... I think the bang idea is a great one. I've seen a number of them in the TLC American Cancer catalogue and think they are great. Last night at 9 pm, I went in to get into comfortable clothes and came out with my wig on (haven't worn it for at least a couple of weeks.) My husband looked at me funny and I just said, I wanted to remember how I looked with hair. I've gotten used to the bald head, but just wanted to feel a little normal. I still have a 5 o"clock shadow on my head and it drives me crazy because it catches on the pillowcase! LOL Maybe I should get satin cases and sheets. I'm sure that will make me feel sexy!!! (not!:-) )
Hope all else are having an OK day. Anyone having a not-so-great-day, we're all here for you!
Dara
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Hi Kechia -- I am the one that uses neuprogen. So far the SE's sound the same as the one you are using. I have been having issues too with the blood counts. Now they have increased the dosage and have extended the number of injections. We will see if that helps... My 3rd session is on Friday morning.
Dara -- I know how you feel... Looking forward to seeing the last of the stubble.
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Juststace, my 3rd day is usually my worst day and then I get feeling better after day 5 or 6. Being tired is normal please listen to your body hen rest is needed. If I ignore it I pay for it later.
Hopefloats, your wig looks awesome!
ElizabethAM, the Olcott Center here gives out gas cards and will arrange transportation if needed.
Yay for being sprung and having your port placement scheduled! It's funny the things we cheer each other on about here but only to those who don't know what we are all going through.
Sattipearl, wow you have been through so much! It's amazing what massage and acupuncture can do for your body.
tishabe, losing your hair can be very traumatic. For some reason when mine started falling out it didn't bother me to much. I usually just go around bald most days :-)
Kechia, I hope your migraine finally went away and I hope it doesn't return. I've only had one and I would hate to go through one with everything else you have going on!
barbarau55, I'm glad you were able to enjoy your dinner with family. I'm very happy you made it home before your "cleansing" moment!
Sensi, either wenchie or Lori works for me. I'm happy to hear your SEs have been minimum this time. Being lazy is ok, I'm the same way. I seem to do most chores on one day and sleep the rest of the week.
Kz1966, I love the idea of velcro bangs! I'll have to look into that!
My day 2 after infusion #3 has been pretty normal, I should be feeling worse tomorrow afternoon if things go as usual. No problem with the Nulasta so far this time. I'll get my hubby to remove it tomorrow, that's the worst part of having the pod. I went to visit my mom today but she was asleep so I just dropped off some books for her to read and her favorite kind of soda. She'll know I was there. It's not a good place for me to hang out in. It was a pretty easy day and I'm hoping for another good nights sleep like I had last night!
I hope I didn't miss anyone and I apologize if I did! My best wishes for mild to none SEs for everyone on your next infusions.
Hugs, love and prayers for All!
Lori
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friends,
My next appt. is 9/13. Will be discussing stopping treatment.
I wish you adeiu. And love no matter what is happening.
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Sattipearl- I can't find the right words to type.....thinking of you--looks like you've been through and have continued to go through the ringer. I just wish you peace....some smiles. Thank you for being with us, making us giggle and giving us your thoughts. So thankful.
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Good morning,
White blood cell count was normal so was able to have my infusion yesterday. Dr. said I can work thur and fri but does not want me working next week until I get my blood work done again. He feels my white blood cell count will drop again. I'm flying through my vacation and personal paid time! Wasn't planning on it going this way lol.
After my first infusion, I only made it half way through Friday before i started feeling yechy so we shall see.
I went and got my haircut short yesterday since it's coming out and when that day comes, it'll be short enough for hubby to shave it off.
WenchLori - https://www.headcovers.com/wigs/hats-with-hair/ban...
Above is the link for the bangs. I ordered the ones in the pic with the pink turban. I ordered that same color too. They have lots of great stuff on the site.
Wishing everyone a great day. I'll post to update on how I do with SE's this time around.
Love to all!
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Satti, I wish you the best of luck and experiences in the rest of your journey. Hugs and much love!
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I look so forward to seeing my granddaughters on Thursday we have a family pizza night ... My little Rylee woke up with a cough & runny nose so I guess I can't watch her this afternoon. Usually my SIL drops off the girls on the way to work & I keep them till my DD gets off work ... Darn ...those girls are the highlight of my week. I sure don't want to find out what happens when we get sick..!!
Sattipearl ... I am with out words. I am sure you have thought long and hard about this and I guess sometimes all we have left is to at least make our own choices that are best for us... Prayers for you 💕
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Kz1966 .... Hope your SE are mild and thx for the website ... I just get tired if something always in my stubbly/irritated head ...
Dara ...not sure if the silk pillow cases would make me feel sexy ... Thank heavens my DH still thinks I am 😳
Hope it's a good day for y'all .... Love & hugs
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I had my blood check today - Day 11 after Tx 1 (8/29/16). No nurse visit, no questions, no exam. Just took the blood vials and have a nice day. Is that how it is with you guys?
So far, it appears that my 'worst' days are 7-8. On those days I was in the bathroom a bit with the Big D, hip pain despite Claritin (skipped the night before cause I thought I was in the clear - opps!) and everything taste like dirt. Thank goodness I could tolerate Gatorade. I slept a lot, but that could be because I took the nausea meds again since that reared up again. Since then, other than a few foods/drinks having a bitter aftertaste, I feel fine - no meds for anything - even the bathroom since things firmed up there. Thankful no nuerapathy troubles and just a tiny sore on my tongue.
Should I expect more of the same for round 2 on the 9/19? I know the fatigue increases, do the other symptoms as well?
Picked up my wig and hat order today. Hair still holding on tight, though it is early.
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I just seemed to be more tired, but I did get heartburn that lasted until I went in the hospital and got a med for it.
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Hi Jandjmom We both have the same chemo regimens. Your side effects are same as mine. My second time eas pretty much the same. I didn't start feeling better until day 8 with 3 thru 7 being the worst. The big D was the same but my taste buds definately got worse with the dirt taste. They just check your blood to see if your white and red counts are ok for the next round. I will have 3rd round end of next week, I'll let you know how it's going. Hope this helps.
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Thanks Karey. How do you handle the dirt taste? Hate to think it gets worse. Water still doesn't taste right. It has a bitter aftertaste. And bread. Guess, I'll stock up on Gatorade. Hope all the sodium is okay. BTW - even adding Crystal Light to the water is yucky. Gald to hear (strange to say) that the Big D doesn't get worse. I didn't get sore or anything, but good to know I only have to stay near the bathroom for only a couple of days. Tired I can deal with. I love sleeping
Also, The blood check was mid cycle. I get another on infusion day (they have an in-office lab). I thought they wanted to know if my blood cell counts were healthy and would rebound after treatment?
Have you lost your hair yet?
Elizabeth - I had a touch of heartburn, but so far the couple of times I took an anti-acid pill it worked. Sorry, you had to go to the hospital!
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jandjmom- i finally got my taste back today, day 14. But sweets were the only thing that tasted good the entire time. I have yet to have a metal taste, i don't think we have that chemo just the dirt taste. Believe it or not i still have hair that looks like a baby's 👶! I cant believe it not going to all fall out. The pain from the nuelesta shot wasn't as bad this time, nor the fatigue. I wonder about #3 but dont worry #2 is no worse than #1 for me.
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Dara --- Got tired of the stubble. So I took my trusty Venus razor and shaved my head this morning in the shower. It was easy to find the stubble with my fingers and I got it all.
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First, Sattie, I too am without words, but completely understand the need to just stop. I think for some, the treatment really is worse than the disease, and you just want to have as many good days as possible. All our love is sent to you and your family.
Went today and picked up a wig I had ordered. I really like it, but scarves are still the most comfortable. A friend went with me and it was nice to get out. My taste buds have returned for the most part so we went for a great tortilla soup on the way home. So I have another question, I know many people get watery eyes (and runny nose), but do any f you feel like the edges of your eye lids are having mini twitches all the time? I was putting on makeup this morning and could even see it in my magnifying mirror. It's really driving me crazy!
Cali, sorry about your granddaughters, but we need to be so careful right now. My MO said the second week after chemo we are at our most vulnerable.
Does anyone who get "D" take anything to avoid it? After this last episode for me, I'm a bit worried about the next infusion. It's hard to walk the line between constipation and diarrhea.
I wonder if it's the taxotere that wipes out our taste buds? I have taxotere and cytoxan. I think I want something, know exactly how it should taste, and then it tastes like dirt. It makes me still hungry because the taste hasn't been satisfied. By day 7 though my taste buds are beginning to come back. I think the baking soda rinses helped this time as I never got any canker sores, just the thrush.
KZ, congrats on the blood count!
Lori, hope your mom is doing better.
Hugs to all else...
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hi dara I take immodium and it seems to clear it up. The trouble with this big d is I get no warning beforehand, no stomachache, nothing. Then i have 2 minutes to run. I never had a really good stomach but this is bad. I think I will as for a prescription for the third round it it does get better. I'll let you all know.
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blood counts were normal and I'm set to go today at noon. They also said there was no need to add neulasta as my counts showed it was fine- so again this round I won't be getting it.... They will once again see if they need it when round 3 rolls around. I'm worried SE will be worse this round, but will deal with whatever comes.... I'll take my premeds in a couple hours and then head in to the hospital at lunchtime.
It's the start of hockey season here and I have been in the ice arenas 4-5hrs a night all week. I told my fellow board members that I likely won't be there this weekend for extended periods....but hopefully I'm strong enough to be there at least when my kids are on the ice for try-outs. I'm responsible for overseeing tryouts for over 200 kids and placing them all on teams based on their caliber so the stress is intense. I have to be realistic though, of what I'm capable of. And to think- this is my volunteer position- my actual paying job is busy right now too so I'm working 10-14 hour days.
Gonna try and hydrate and relax this am.... Hope everyone is doing ok.
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Had my neulesta shot yesterday and feel a bit sore today but not bad at all.
Let's talk hair. Mine started shedding alot on day 12. This morning in the shower I was okay too much coming out, today is the day. I was scared and I cried but I asked my husband to please do it and get it over with.
I didn't cry while he did it. It actually felt good. When he was done, I dreaded the walk to the the bathroom to look in the mirror. When I looked in the mirror, I saw me!! I didn't see some sick cancer patient like I thought I would. Now I did make sure I had my make up all pretty lol.
I am so glad that is done and I feel really good about it!!!
I hope this can help someone else.!!
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Hi everyone!
Had AC #3 yesterday. Went okay, but I was pretty sick yesterday afternoon and last night. I feel better today and am at work.
Kathy - glad you took the plunge and did the big shave. It sucks, but I felt better afterwards, too. I do feel pretty private about this whole thing and don't like attention. I have those bangs and I love them! They are long enough to sort of make side burns with them, too. I just put them under a hat or scarf. I don't have the headband yet, but I ordered it. I think they will stay in place a little better with it.
Sattie - Please keep us updated. I am thinking of you.
Hugs to all. Have a nice, relaxing weekend!
Annie
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Kz, congrats! I felt the same when I got mine shaved. And it's been great how quickly I can get ready in the mornings!
Hope, I'm amazed you can keep up that schedule! Good for you!!! Kids sports really keep the whole family busy don't they?
Thanks, Karey. I guess I'll talk to my MO about how to deal with all intestinal issues. This time I'm still having a quest stomach even this second week. Eyes are watering like crazy this morning. These SEs are nuts. If they'd just stay the same, I could figure out how to address them, but they keep changing. Gee, wonder what the 3rd round will bring?
Tomorrow is the first anniversary of my sister's death so my younger sister is coming to visit. We plan to celebrate how incredible she was and do something she loved.... maybe go to a few garage sales! She was an artist and always looked for unique finds.
I got to FaceTime with my daughter's children last night. It was crazy as it was bath time and all 3 were in the tub together. I think I've mentioned the issues with one of my grandsons who has disabilities and is struggling in kindergarten placement. Well, things aren't improving yet, and yesterday my daughter had to take the day off and meet with an attorney. It looks like it will be a difficult road ahead! Last night my grandson was so cute and kept signing could he come sleep at my house. Just love them all!
Hope your Friday is good. I know for those who are working, Fridays are the best (next to Saturday morning!)
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Morning! I know we have talked about this over and over but let me tell you .... My shaved head has a bunch of little pimple looking bumps on it and I am one of this people that can't keep my hands off of a bump on my body ... Last night it drove me crazy even had DH take a good look ...after a complete investigation DH said Yup you got some pimples on your head .....it was driving me crazy I knew it was worse ... 😳 So now I have a shaved bumpy head. Congrats Kz1966 for taking care of business
As far as the D issues ...first I was bound up with the big C then I took a mild softener and wound up with the big D for days to which I finally took Imodium. ..all I know is thank heavens for hinny wipes. Sometimes the SE are exhausting ...this time I had sharp cramping in my left groin area it was scary & I feel so bloated each evening from drinking so much water I think I am going to pop.
Dara does this mean this is our second week or is next week? I am the day after you for treatments?? All I know is I am ready to get out and about more. I use to rarely spend the day home & now it's me and the pug. I hope you and your sister have a sweet day together tomorrow... It will be rough but together good 💕
Hopefloats I hope your day goes well and somewhere in your busy mom life relax this weekend ... I don't know how you do it? I know we do what we have to. My aunt says God is giving me fatigue because He knows I would never rest and heal.
Y'all have a great Friday ... Love & hugs 😘
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I have been battling low WBC, but my NP never asked me to stay home. I have been working, going out to eat, shopping, watching HS football games (outside the fence this year) and I have yet to catch anything. I (and my family) are very good about handwashing and my husband sprays the house with sanitizer on a regular basis. I do tend to let other people open doors if I can. Hoping to not jinx myself, but I am trying to live my life as normally as possible through this. The 3rd-8th days for me were the hardest and I've had a bad day here and there, but have felt pretty ok most of the other days.
Hoping that my WBC comes back up soon. Unfortunately my liver enzyme levels went up again this week, so NP thinks that it is due to the Taxotere. So hoping that my well being continues because I can not take any medicine until they come back down. Oddly, they are still planning on my next chemo dose as scheduled (will bring my taxotere dosage down though). Anyone else having liver issues? This is a bit scary to me. I don't want my liver damaged...
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Cali, my MO said days 7-14 we are the oat vulnerable. I still don't stay home though. I go out, gout out to eat, shopping, etc. I'm just really cautious about washing washing washing hands, and avoiding anyone with a sniffle of anything. I know it's silly, but I got out of a car and the person parked next to me was coughing and sneezing so I held my breath while I walked away! I know, really dub. My DH had to take a neighbor to ER yesterday and I wasn't really happy with him when he returned. I made him immediately go in and take a shower and put his clothes in the washer. I know there's a lot we can't avoid, I just try to be careful when I can.
Kechla, I hope your count comes up quickly. I've heard of others who have to delay an extra week each infusion to get those counts up. I haven't had any liver issues, but have had really elevated calcium and glucose. The steroids cause the glucose increase, and I'm convinced they also are elevating my calcium. I don't take any added vitamins or supplements, so hope everything can get back to normal. Days 3-8 are the hardest for me also. Days 1 and 2 seem pretty normal. I did switch to Allegra last time with the Neulasta, and my SEs for pain etc were less. Don't know if it's because of the Allegra or just that it was the second time for the injection.
Kathy and Annie, did you get just bangs or a whole halo? I really like scarves, and just tried using one of those loop scarves and it works so great! But I think the bangs might help a bit. The cap I bought for under the scarves is so wonderful. I got it from Wrapunzel and it's got some poof on the top so it gives you a little vole under the scarf. I have a little bit of a flat head in the back, and this shapes the scarf nicely Plus it has a velvet adjustable headband so nothing slips. I'll check out the site you recommended Kathy. Plus TLC is great for all sorts of products.
Annie, so very sorry you got so sick. How many infusions do you have to have? And you don't have to do radiation afterwards do you?
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Hi Dara - I have bangs and a halo. I am wearing the halo to work today with a knit beannie. Here is the halo: https://www.headcovers.com/bob-hair-halo-hats-with-hair/ I have it in a pony tail today. I like both - but I really like the bangs. I just like being able to go to a festival or to a restaurant and not get stared at as much. I know people don't mean anything by the staring; they are just realizing my situation and/or remembering a personal situation, but I still find it disconcerting. This is about me, and maybe I'll get over it some day soon. I have 4 A/C (so just one more!) and then 12 Taxols after baby comes (due date is Dec 3rd, but my oncologists wants me to be induced mid-November so that we can continue treatment as quickly as possible). Then radiation! I hope to be done with treatment in March.
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I'm behind- as always. Too many people that "want to see me"....um, I'm not on my death bed or anything lol. I know I should appreciate it, but it's just weird. My mother in law spent 4 hours with me yesterday, which was fine, but on the way out she says "I was a little scared to come over"....then says "but you look good, you are still YOU. Um yes- I am! So fascinating but weird at the same time.
Karey and JandJmom- I'm on the same chemo as both of you, but you're ahead of me- my 2nd treatment is Wed. I didn't get any metal taste, but hope things don't start tasting like dirt! Things just tasted off that first weekish- and I agree Karey- sweets seemed to be fine. I would "crave" certain things that week (7 up tasted good, trail mix with m&m's tasted normal), but now I don't want those. I also was the same- not feeling "semi-normal" until day 8. I didn't have much D, more constipated, so hoping to get ahead of that next week as it made me nauseated last time. I did have a good case of thrush that week after and tried baking soda, salt, and biotene. Biotene seemed the best for me so I swished after every food or drink. MO agreed to just keep using that. JandJmom- I haven't had any blood work done mid way- I will do it Wed am right before treatment. Seems to be a quick turn around for the results.
Dara- I'm constantly queasy....and I don't know if it's my sinuses, chemo, or a combo. I eat, and it goes away for a bit, but always there. I just deal- haven't taken anything.
I feel like a lazy bum next to all these folks staying so busy with kids and work! I'm still running my daughter and dog places, but definitely take it easy when I can, which is daily. I was really gung ho with the "I won't get sick", until that first treatment (and also this board) and I realized- I'm not going to jeopardize keeping this treatment on schedule - want to stay on track as much as I can, so I'm now once again, a germaphobe lol. I can't do my work....but possibly could work in our office if no one is sick. I secretly ride the buses in our county, and evaluate the drivers. So I've been doing this for 4 years, and I've been super healthy even though I'm exposed to who knows what! I think it's helped my immune system, but the husband and MO reminded me this is taking that all away- so now I respect that. I thought being bald would have been a great undercover look for a while though!
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Annie- you amaze me- I know you have no choice but TO be amazing
Looking forward to smiling baby pics in the next few months!0
