Chemo starting November 2018
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MaddieBrie1 -
I have four weeks between last chemo and exchange. My doc said 3-4 weeks post chemo - we just need to make sure my white blood cell counts are high enough. I can't wait - the TE are the worst!
Today is kicking my butt. I had bad muscle aches all night and didn't sleep much. Also some nausea, which is the first time I've had this. This morning I'm extremely lethargic - gonna try to get some sleep now. Hopefully. Then a nice, hot epsom salt bath..
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MB1 - the putting away is the part I hate most! When DH and I first moved in together we made a deal that I would fold all the laundry and he would put it away. If it were up to me it'd sit on the end of the couch all piled up and we can just wear the clothes out of the piles until they're all used up.
This morning I went to a corporate meeting and it was kind of my first time out and about in the wider world as a cancer patient. A lot of the people there I email with or talk to over the phone almost every day and I'm pretty sure most of them know about my cancer but this was their first time really seeing me and the reality that I'm on chemo. One of my counterparts at another building is a breast cancer survivor and she was so kind to me today but not in a syrupy sweet or patronizing way that folks who have never had cancer sometimes are without realizing it. I think I needed to see her today and connect her with this breast cancer struggle because she isn't just a woman who lives her life, she really lives. She is such a larger than life woman and in my head it has been hard to imagine a world where I won't always feel the way I do now and she gave me a really good picture of how great things can be once you get through this.
Happy weekend everyone. TGIF!
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Hazel I'm glad got to meet that survivor!! How exciting! Larger than life sounds great! I used to work with a woman who was in another dept and when she started working with us she wore wigs and hats. Then she moved to our dept and lost them 8) And sported a beautiful bald head. She has permanent hair loss from taxasomething..any how she was so on fire for life!! Such inspirations that we won't always be so worn out
My RBC's are state get low and believe me I can feel it...winded and sluggish. I'm going to break into my stash of frozen fruits. I made healthy smoothies for me and my granddaughters of a banana... strawberries ... blackberries... some milk and ice and a packet of splenda. Yummy maybe this should become my lunch?
Any ideas before they try to put me on an iron drip bag?
~Nanette
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Hi all-
I went for my last A/C tx Wednesday and my port wouldn't work. I've had problems, but this time it wouldn't work at all. So they scheduled a portogram for Friday and A/C chemo on Monday. Yesterday, was was poked and prodded at the port site for the portogram. The process was to access the port, insert a dye and watch the dye flow via x-ray to see if and where the blockage is. One guy tried to access the port unsuccessfully. So after trying to move it around, another gal tried again. When they would push the flush it would burn badly. I went back to the x-ray room. One tech said "I see the problem right there, the port is against the vein wall". It sounded good to me! They started with the dye. It was getting no where so they stopped. A doctor came in and said that he would report the findings to Dr. Brock, the one who installed the port. He said that it could be possible that there is a blood clot and we should watch that it doesn't enter my lung.
I had hoped to hear from someone yesterday as I don't know how the Chemo will go Monday with a broken port. I want to get this fixed soon so I can get on with things!
It's getting hard to get out and about. I find myself leaving early in the mornings for the grocery store. It's not so fun dealing with sympathy smiles all of the time. Maybe I do need to try to find a wig so I'll just blend in.
On a better note, hubby and I took off to the mountains for a weekend get-away last weekend. It was WONDERFUL! We spent one night drinking wine, eating cheese and crackers, and watching movies in front of a big roaring fire. God must've known I needed that before the week I was going to have.
Thanks for hearing me. I love reading your experiences and knowing I'm not alone on this crazy trip we're on!!0 -
Dear F; I also had a very hard time my third cycle, and my Neulasta patch certainly stayed put. This fourth cycle has been really difficult, as well. Lots of aches and pains, tinnitus, pins and needles, and fever, ranging from too-low to way too high. I finally gave in and started the antibiotic the doctor gave me IN CASE for my sinus infection (chronic) because I woke up miserable last night. I will be so glad when the next two weeks are over. For cycles 1 and 2, I felt pretty well by day 7 (though I ended up in the ER in cycle one with an infection). But the Neulasta obviously does a number on me, or the cumulative effect of the T and C--last cycle and this cycle look like I may have pain right up to the very end. But it is almost over. And, I understand I only have 20 radiation treatments over 4 weeks, not 25 over 5, so that is great--starting in February.
Best to all! We can do this!
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Em - I haven't had much trouble w my port, it is just really sore now with the weekly Taxol tx. I hope your port issues resolve soon!
EdithMary - woohoo for the finish! I also had a hard 4rth on the A/C.
Jennie - I realized later you'd also included the time in between chemo and surgery - thanks for not calling out my chemo brain.
Nanette - no adv on the iron front, I'm on the bag myself.... 😑 The onc nurses did say that adding additional protein now wouldn't make a difference to my levels and just to stick w the bag until the numbers improve.
Snow shovelling has me realizing every little ache and pain right now. Under a heated blanket w some hot tea (watching the Eagles and Saints). I think I have developed a head cold. Can't wait to see what the nurse triage line has in the way of suggestions for that. I can't take any decongestants, it spikes my BP. So it'll prob be antihistamines and tylenol with lots of Kleenex with lotion. My bloody noses seem to have improved over the last 2 days (weird). Best to everyone! MB1
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MB1 - I hope your cold goes away quickly!
I haven't been bald for very long but man, I'm sure ready to have hair again. I do love how easy it is to shower these days and sleeping past my alarm clock in the morning isn't that big a deal either because getting ready is such a breeze. Some days I don't even bother with makeup because it will just smear off after a half hour when my nose and eyes start running. I'm just sick of these scarves and beenies. My head is never comfortable in them.
There's no point trying to shower at night right now because the hot flashes have me sweating all night (and all day lol) and I wake up needing another shower. I've gotten in the habit of keeping a spare pillow next to the bed since I wake up in the middle of the night with my pillow drenched and I can swap them out. It's creating a lot of extra laundry. My cat seems to love me more during a hot flash too. She usually sleeps at the end of the bed but once my hot flashes start she comes and curls up against my back and that just makes them worse! She's lucky she's so cute
I found some energy over the weekend to do some deep cleaning tasks on my house. I built a shelving unit for my kitchen for extra storage and got serious with the clutter that always seems to pile up on the end of the counter. I'm hoping the energy gods smile down on me again because my hall closet is embarrassing and when I opened it the other day a whole bunch of stuff just fell out on me.
Yesterday I ate a piece of bacon and it almost tasted like bacon. Must mean it's almost time for more chemo! Two more days until Taxol starts. Stay warm warrior women - The snow that seems to have blanketed half the country is a good excuse to stay indoors as much as possible. A fall on the ice is the last thing we need!
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MaddieBrie, I also have had nose bleeds, lots of dryness and scabbing. I think, like with your mouth, the chemo dries out your nasal passages! I got a great humidifier, which I use in the bedroom at night and in the living room in the daytime. (I don't teach for January term, so I am home for this cycle, which is great). Anyway, the regimen with netipot and humidifier has helped some.
Are you all finished your chemo?EdithMary
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Emily, how did you manage today? Were they able to give you chemo? It must be so frustrating to be so close to the end, and have this delay. I recommend a wig. The Cancer society gives them out FREE in Pittsburgh. I would call and ask if they have a program near you. I use mine for special occasions, not all the time, as it isn't as comfy as a head-covering. But it is nice to feel normal. I even had some nice person say, "Oh how nice, you haven't lost your hair!" (HA!!) I went for something as close to my own hair as possible: guess I did it!
Anyway, wanted to let you know I was praying for you and hoping it was okay today.
EdithMary, who is NOW finished, but suffering with side-effects for a week or so more.
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Hi Edith....Friday, they did a portogram and found that my port isn't working. There's also a blood clot at the base of the catheter. Monday's chemo was cancelled and an interventional radiologist is going to try to get the port working. I'm on a blood thinner, Xarelto, for 4 weeks, and a PICC line has been mentioned to get my chemo treatments going again.
I am nervous about missing chemo by a week, as this is a very aggressive cancer (70%).
I had to laugh at the runny nose and eyes comment. I know that feeling! For some reason my eyes are at their worse when I wake.
Love you gals!!
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Emily, I am so sorry your port is not working and you are missing chemo by a week. I hope they can get this all fixed and straightened out. I went in yesterday for a blood check, just because I was so tired. My platelets have gone from 64,000 to 51,000, which he says is not bad, so at least I know I won't miss treatment #5 in 2 weeks. I am a little jealous of you AC Taco ladies, you are finishing up, and us TCHP's have 2 more left. As I was getting my blood done yesterday, a lady with a clip board came in and offered to fix my co-pay for 3 of my drugs to a reduced fee. I couldn't believe it really. I will still carry my out-of-pocket cost for 2018, and now 2019, but I was totally happy to sign her form and see if I could qualify for that. I still have a lumpectomy and radiation coming up, so will still be a good candidate to profit the hospital. EdithMary, nice that you only have 20 radiation treatments. I will have 30. Think spring and thank you for continuing to inspire me. My doctor talked of his 88-year-old patient yesterday, who rides her exercise bike rigorously 30 minutes a day, and has no side effects - gives me hope! Hugs, Lisa
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Sinus infection, since Sunday possibly, and a course of antibiotics, cough meds and Tylenol to bring everything under control for this one. I just hope I feel better and this darn coughing stops. I feel like I did when I had bronchitis and strepp throat together. Fever broke yesterday, so thats something.
I'm glad, Em, that you've got a course of action going forward for the port. I don't know much about Xarelto, but there are definitely some informed other ladies on this site.
MO CatLady - I'm glad that lady came around with the clipboard and form! I hope that really helps reduce your costs.
I got some of the first notices that the auto-pay back on the Flex Spending acct I set up started getting some funds posted back to it. I'm glad it's working....
MB1
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Hello ladies, I haven't posted in a while because I was feeling so low. Cycles #3  of A/C really knocked me out. Managed to get through them but not without a lot of moping and self pity. My Dr offered me a week between that and the beginning of Taxol and at first I declined because I just want to get through this, but after second thoughts I took the break. Boy did it make a difference. I actually felt human, my mouth sores healed and my mood improved. However my test buds are still dead so food is tasteless. Hard to eat. Then I got really anxious about the start of Taxol. Went in yesterday with a friend, and cold gel packs for my hands and feet. It wasn't nearly as bad as I feared. A little awkward ( no access to my hands) but the time went quickly and all the steroids (from the night before and during) actualy gave me energy before so I was able to get on top of some things today.
Good luck to you all. My heart is with you. Amazing how individual this process is even going through a similar path. But we keep pushing on. And I am inspired my the courage you are all showing. Thank you for sharing.
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I felt well enough last night to go to spin class and it nearly killed me lol. I think it was a pretty rude awakening to the reality that I feel pretty good considering I'm on chemo but not nearly as good as I did before. It's still so strange to me that I've lost so much stamina in such a short period of time.
I backed off the colace before starting the Taxol this week because I was afraid of the chance for diarrhea and now I'm in that awful place of having to play catch up with the constipation. Will I never learn? Otherwise taxol has been treating me pretty nicely so far. Most everything I eat or drink that isn't plain water burns like hell going down but that seems a minor compliant all things considered.
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Hazel-nut. I am in the same predicament. Worried about getting diarrhea so erring in the opposite direction. It’s such a fine line. Eating is also an issue since everything tastes off or bad and hurts going down. However my energy level is better (haven’t tried exercise) so I’m getting little things done and that rally does improve my mood. Focusing more on the positive than I was which is way more than I’d been able to do.
Good luck to people finishing up A/C. Hang in there
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is it the taxol that has my tongue feeling like it's been burned? I asked my MO about it on Thursday and showed him my red and sore tongue and he said "Oh ...okay... I'm really only worried about that only you getting thrush." Seriously??
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nanette7fl - I went through A/C and am now doing taxol. My tongue has been this way for months with it affects my taste. Seems to be one of the wonderful side effects. Sorry. I dream of being able to enjoy food again. Literally dream of it
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Nanette - AC had my tongue feeling very raw. I didn't really have any mouth sores but my mouth in general was just very sensitive. I've only had the one taxol so far so I'm not sure if the raw mouth feeling is just leftover from the AC or is being caused by the taxol too.
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Maddie - what did you use for the neuropathy, the cold things you used? I may try that next week. Are you AC Taco ladies all finishing up treatment now? Do you girls do AC and then the Taxol, is that how it works? I have 2 TCHP treatments left. I told my boss I may take a couple of days off this time, since treatment #4 I missed a day of work, wish I had missed that next day of work, and then stayed in bed all weekend. It seems it really does get harder each time, although everyone is different. Sorry to hear of the sore tongues. Diarrhea had me up at midnight last night, it doesn't always pay to try and eat protein to keep up your counts. Hope you all are doing well.
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MissouriCatLady - I finished A/C and just had my second Taxol. My husband got me gel hand and foot gloves on amazon. I don't know the name but I could find out if you want. I take them in an ice cooler with regular freezer gel packs. No one else around using them at my center. Everyone thinks I'm bringing in lunch. The feet ones aren't so bad but the hands mitts mean I can't do anything at all. Like floppy boxing gloves. Luckily after the first treatment (which was obviously slow as they test out the meds to make sure no reaction) it's only like an hour with the actual taxol infusion. I'm also taking vitamin B complex. My dr recommended B12 but I see a lot of people mentioning B6 over on the weekly Taxol board. I am doing anything I can to reduce the chance of extent of neuropathy.
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My chemo appointment for tomorrow has been cancelled since my white blood cell count is too low. It's the first time that's happened.
Is there anything I can do to boost my white blood cell count?
My next chemo appointment is February 7th - hopefully everything will be OK by then.
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Lizzie - Thank you! I'm looking and trying to decide. I talked to my nurse about this, and she has never heard of doing this, which kind of surprises me, but if they've not seen anyone doing it at your center, that makes a little more sense, I guess. My doctor also has me taking complex B vitamins. Chantalbe, my last count was 54,000, it seems to drop 10,000 every time, and it was at that time he suggested I take folic acid 2 a day and complex B vitamins. From what I've read, and I don't know much, eating protein helps. I can eat cottage cheese and eggs, but if you could eat meat, they say that's better. I try, my appetite is just starting to come back around before treatment next week. I'm sorry they had to put your treatment back. When I go in Wednesday and they check my blood, they may do the same thing to me. Hugs.
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and I should say, that is my platelet count (I get the red and white things messed up sometimes). That dreaded Neulasta shot helps with one of them.
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Hazel-nut, spin class? You totally rock in my book! Most days my stairs are more than I can handle. I keep telling myself that when I get to rads it will be different. You inspire me to try to do more now...at least till round #5 comes along next week.
Chantalbe - I am sorry to hear about your counts. Mine have been on the low side and I have been worried it may cause a delay. I thought that was what the Alien (Neulasta OnPro) was supposed to do... keep our WBC's up? My PA told me to eat more red meat for my RBC/ Platelet's. I hope your counts come up and all goes well Feb. 7th
MissouriCatLady - I hope you are able to get things worked out for icing. I am really fortunate that my DR provides ice for hands and feet for all his patients, as an office wide "standard of care" My nurse brings it to me before she brings the Taxotere to the pole. I even suck on ice during that time - I really believe it helps a TON with preventing mouth sores. The nurse suggested that during my first round (they don't provide that as standard practice yet) and I have done it for rounds #2-4. I haven't had sores since round #1. My round# 5 is Tuesday. I am both looking forward to and dreading it. I keep telling myself "one step closer"
I hope today is a good day for everyone. One step closer to the finish line ... here's to a better tomorrow!
F
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Frmthahart - I managed that one spin class and haven't been back since! I'm hoping to go tomorrow or at the very least spend 30 min doing a slow plod on the treadmill. Pre chemo I worked out 4 days a week but since starting chemo I've been back to the gym probably 4 times and I need to get my butt in gear.
My blood work has been slowly trending down each week since the start of chemo. Nothing to stop an infusion over but now I'm firmly in the realm of below normal. I suppose if the trend continues I'll end up on on the blood work naughty list and they'll end up having to do something about it. So far life on taxol hasn't been too bad. I was surprised by just how painful the bone pain was but I started taking the claritin again and it seems to be working so far. I'm getting some slight tingles and numbness in my right hand but it's very minor.
My appetite is still non existent. I could go a whole day without eating and not feel a single hunger pain. The other day I had an absolutely insane day at work and ended up not having anything to eat until after 6pm and didn't feel hungry once. For the most part I do an ok job of remembering to eat something even if I don't feel hungry but its hard to do more than take a few bites when you already feel full. Another good reason to get my butt in gear and get back to the gym - I'm sure the increased physical activity will help get my systems back in working order. The good news is I have plenty of cushion to spare so I'm not at risk of being underweight anytime soon lol.
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One step closer, thank you, Frmthahart, I will try to place that thought firmly in my mind as I go Wednesday for #5. I do relate to looking forward to it and dreading it. We can do this. Good luck with your #5 on Tuesday. I'm taking 4 bags of frozen peas to put on my feet and hands to try and put a stop to the peripheral neuropathy I'm getting. Try and keep eating something, Hazel-Nut, it helps with the blood count, so my relatives keep telling me. By this weekend, I will be in the same boat and won't have any encouraging words to share about eating, so I will tell you that now. My eyes are watering now and I can see reddish crease lines in my fingernails. Doctor told me to use tea tree oil on my fingernails and I'm trying to remember to do that every day. One step closer...wishing everyone positive thoughts and good days this week. Be positive - it is better than the alternative. Lisa
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I had a dream last night that I woke up and all of my hair had grown back. My hair was really nice in that dream, it was hard waking up to reality. I'm so sick of being bald. The novelty of not having to spend so much time managing my thick, wavy, unruly hair has certainly worn off. This is the week where my skin has finally given up on me. My feet and hands look atrocious. I've been covering my feet in cream and putting on socks but have discovered I absolutely cannot sleep with socks on. I just put in an order from Amazon for aloe socks and will try and wear them all evening around the house and hopefully that will help some. One of the pairs is a nice heathered black color - I might be able to get away with wearing them at work... I have never had to deal with dry skin before so this is a new sort of learning curve for me.
One of my coworkers shared with me over the weekend that she had a brain tumor a couple years ago and had gone through surgeries and radiation. That got us on the topic of proton therapy which is something I have been researching as a radiation option once it comes time. She had used the center that I was considering going to for a consult so it was really helpful to know someone with a first hand account. I've discovered a small group of us at work that have been through various cancers and it has been more helpful than I could have ever imagined. I think its helpful for them too to have others near that really do know what they're going through. None of the others have had breast cancer but that doesn't matter. This cancer curse stinks no matter where the originating source.
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Hazel-Nut, we went out for wood-fire pizza Saturday, to celebrate being able to taste food before #5, and I wore my hat with the ears on it (I think it is cute). Afterwards, I told my husband, I'm not comfortable going out to eat anymore, didn't you notice everyone was looking at me in my hat? He commented that is because it had ears on it! He always tries to get me to smile. Sunday, he had me put on my wig, and then my hat, and it looked like I really had hair! (they sell those types of things on the American Cancer Society wig page) I totally relate to being tired of being bald. I count the days after I get done to know when the peach fuzz, hopefully, will show up. I have to remember, these drugs that are killing us, are really helping us. Someone in the October chemo mentioned watching a movie, Living Proof, about the invention of Herceptin. My nurse navigator has told me it has saved many lives. I'm going to see if I can find it on Netflix, although I haven't been able to bring myself to watch Love, Gilda just yet. Lisa
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itching... my hands and feet have been driving me crazy today non-stop itching & at times almost burning. Is it neuropathy or something else? Also there's a few spots on my face in a small area that there have appeared like acne or bumps and they sometimes itch like mad.
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Nanette, I had constant unrelievable itching hands for two days in a row recently. I am on abraxane. I asked on the abraxane thread but no one had a similar experience. After it finally stopped itching I woke up with slightly swollen hands between the thumbs and forefinger and those fingertips were numb. My best guess is it was a precursor to the neuropathy. I scratched my hands pretty much non stop. I was convinced I had scabies or something like that lol. I found your post by searching for "numb" and then "itching" .
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