Anyone starting chemo August 2016?
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Barbarau55, I'm very sorry that you're dealing with so much. Although experiences vary, I've read that many women don't find Taxol as challenging as the AC. I hope you'll find yourself in that group.
Buffering, I'm sorry that Taxol has been so unkind to you.
YAY for Cali & Dara (or California and Data as autocorrect kept INSISTING was what I meant to type)!
Lyn
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Elizabeth, I don't know if this would prove helpful in taking to your doctor about weekly or biweekly Taxol, but thought I would share:
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Woo-hoo, Woo-hoo! Surgery -- check! Chemo -- check! Had last chemo treatment today. At the end all the chemo nurses came in clapping and singing Zippity Do Dah and presented me with a champion medal. Time to celebrate and move on to the next step!
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So glad Dara!!! Hope you SE for this last round are mild! You are such an inspiration! Stay positive! You'll be done w radiation before you know it. :
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I'll be joining you also Cali and Dara. My last treatment is on Wednesday. Did labs today and see MO tomorrow. Hoping I can get her to release me a little early to work. Has anyone heard from Wenchlori at all? I sent her a private message and never heard back. Round 3 for me was alright. I think I may of had a skin reaction , but they didn't have me come in. Will be interested in what doc says.
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DARA, DARA, DARA!!!! Congratulations...
VLH -- Thank you for the link.
Sensitive -- That is a heck of a rash. I would really get it looked at.
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Yay, DARA! Congrats on your last chemo!
I had my 3rd of 6 infusions yesterday after talking to the doctor. Appears the nurse who conveyed my high liver numbers mispoke. Yes, they were higher than normal, but were normal yesterday morning. The doctors commented that he doesn't get concerned until they are 4-5 times normal. My mid cycle numbers were a couple of ticks about normal - not even twice. So full steam ahead.
I mentioned my mild numbness in my thumbs, and he said to keep an eye on it. He will reduce the dose if it gets worse, but wants to continue at full dose as much as possible. He recommended B6 (100 mg daily) and had no comment on L-Glutamine. I have read that 10 mg a day for around 5 days after treatment was good in a study or two, but they were not controlled studies.. Any thoughts? I have been icing during Taxotere throughout - bare hands & feed in plastic submerged in crushed ice - painful, but if prevents worsening, I am all over it.
Sucking on ice chips, too - no mouth issues yet other than taste, which the doctor says could get worse. Yay. Already have to subsist on potatoes (baked and in soups), scrambled eggs, Gatorade, and Ensure shakes for about 1.5 weeks as it is. Water and bread products were just gross.
He did an exam and said the tumor has definitely gone down. I will have an ultrasound in the two weeks to confirm. I can still feel it, and it appears skinnier, but he seemed really enthused about my results so far and how well I am tolerating treatment.
Also, the nurse had me fill out a form because I lost 8 pounds this cycle asking if I were depressed (no), loss of appetite (yes - especially when everything tastes like crap for 2 weeks!), was I trying to lose weight (no, but wouldn't mind since I am obese) , and did I want to talk to a dietician (no). The doctor totally ignored the paper. I guess he isn't concerned about me losing weight.
I homeschool my kids but always take the week of Columbus day off, so we are off to an indoor amusement park today while I am still on my steroid high before the crash later this week.
Good luck everyone!
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Sensitive, I agree, that rash looks painful, almost like shingles. I think Cali got a bad rash also. Glad you're finishing up this week also! Congrats.
Very little sleep last night for me since I had the steroid premeds, then two bags, during infusion, plus claritin. Finally around 1:30 AM I took a compazine.
Lyn, looks like you started your chemo yesterday. How did it go? Take it easy.
Thinking of you Cali. Hope all your bloodworm is good so things can finish smoothly.
JandJ, so glad the tumor is shrinking. Any smaller size is to be celebrated. It proves what you've done so far has been effective!
Kelly, hope the fatigue gets better. My RBC is also low and has been going down each treatment. MO told me also that is what causes the fatigue. My WBC is high though so I know the Neulasta is also working. My calcium and glucose levels are high (we think due to steroids).
My MO also wants me to start right away on vitamin D3. He said studies have shown a common deficiency with bc patients. I"m not out in the sun too much as it's so very hot here in the summer, so now that it's cooling down (and I hopefully feel a little better) I can get out more. I'll start a supplement to begin with. He said not to start biotin for hair growth until after the next three weeks due to chemo.
Hope all having treatments this week do well and SEs are very minimal.
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Sensitive- congrats on finishing this week and keep us posted on that rash!
Kechla- where are you in the process now?
Dara- still so excited for you! I noticed my glucose was a little higher...so I will watch and ask- thanks to everyone for pointing all these things out! I do feel better today, except that I woke at 3am! lol. I'm not able to nap either, no worries. Interesting about the vitamin D- it's one thing I still take regularly! i've read a lot over the years about how it helps with immunity, so have been giving to the family for years. The pediatrician told me a couple of years ago that he'd rather my daughter have D over a multi vitamin.
JandJ- so sorry about the worries, but glad its ok! Gotta laugh at the Dr's reactions to things....they're so mellow. My NP didn't think the ice chips were working since I have mouth issues each time. I still did it last week, but not as crazy. I'm afraid that if I don't- maybe it'll be even worse?!! I do not ice hands or feet. I get the tingling and like you the MO/NP want to keep an eye on it. I think the NP mentioned B6 too (like your dr- she didn't have a comment on the Glutamine), but she told me to hold off (since I have so much entering my body lol). Super Super exciting that the tumor is shrinking!
I get to go and have an ultrasound on Monday. It'll be so different going into the breast center and not "worrying" about anything since I've got cancer already lol! I might scare some women? No hair? uh oh.
Cali was it you who said people weren't recognizing you? I've learned if I page back, I lose what I type! That's been happening to me for years...even with hair lol. Some how people recognize my husband, I obviously blend. I love people introducing themselves to me and I'm like- uh yeah- we met already.
I'll be doing chemo for another few months...so everyone is welcome to stay on board and listen to me whine! I wish it was wine!
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abj, I just had my 3rd treatment last Thursday. This one has been the least difficult so far (knock on wood). I got all the normal side effects, metal mouth, headache, body aches, chemo fog, a little bit of nausea, also a weird se of my teeth hurting (it's happened all 3 times so far) but I feel like I'm already bouncing back. I only took claritin 2 days this time and no bone pain. Go figure. The first treatment the bone pain was very bad. Also, took Prilosec 1 day and no other heartburn has emerged (yet). My mom came to stay with me this weekend since my husband was out of town, so that was nice. I've been doing good with getting liquids down. I usually alternate water (has to be Dasani), propel, a diet a&w root beer, a caffeine free iced coffee, milk, and more water. I think I get about 3-4 bottles of water per day plus all the rest. Once the metal taste starts to subside, I just drink more water.
My boss at work was nice enough to send out an email to everyone in my office (they all know already) asking them to let me know if they are sick. Now that we are into cold flu season, my extended low WBC worries me a little more. I take the Nuelasta, but it doesn't seem to be as effective as early with me. Usually, my WBC comes back up just in time for the next infusion and I am below 1 on my labs for a good 2 weeks. So far, I have avoided getting sick.
My liver enzymes are nearly back to normal after having been about 4-5 times higher than they should have been after the first treatment. My MO did reduce my taxotere 20% after the first treatment.
My hair is hanging in there (I am cold capping), but is pretty thin. By the end, I will likely get a very short cut until the rest grows back. My eyebrows seem to be thinning quite a bit. I still have arm and leg hair though. I thought it would all be gone... So far my eyelashes are still there too. Although I've heard some lose them after their treatment is done...
So far, no neuropathy. I am also taking B6 and icing my fingers/toes during taxotere. Maybe not as vigorously as some though. I put a bag of frozen peas in socks and rest my feet on them and dig my fingers into them. My husband tapes the feet peas to the chair so they do not slide off. I usually take several supplements, (including vit D since I am usually deficient) but have been off most of them to give my liver a break. My MO said to keep taking the B6 and my probiotic.
I have gained about 15 lbs so far between radiation and chemo. Joy. My cheeks are quite full (maybe the steroids), and my skin breaks out terrible right after each treatment (also assuming that comes from the steroids.) I was going to take a picture of myself last night, but felt hideous. My friends were all at a concert last night that I had a ticket for (Def Leopard!), and was feeling sorry for myself that I sold mine. I am ready to get back to normal life and actually commit to doing things again. Right now, my answers are usually, "Maybe, I'll have to see how I feel then..."
1 more to go! I know the side effects will come again, but I am counting my last treatment as the day I am done! 16 days!!!
Just wondering what happens after. I meet with my MO again the day before my last chemo. What have others' had suggested for after-treatment? How often will you go back for checkups? What kind of monitoring do they suggest (labs, scans, etc.)? I will also be going on to tamoxifen after (for 10 years) so have that to look forward to.
Hope everyone is having a lovely day!
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Kechla, my last chemo was yesterday, but I still have to do 30 radiation txs. I'll be doing my AI at the same time as rads. I go back to see my MO in 4 weeks and then he said he'd be seeing me every 3 mo for a year. My mammogram and ultra sound is set up for 6 mod from end of chemo. I've heard some women feel strange when all the constant appointments end. But I'm with you... I really want to get back to doing the things I love and feeling like I have the energy to do them. My chemo nurses were so cute celebrating the end with me yesterday. Hope rads go as well. Whatever SEs I get this time, it's nice to know that I won't have them again! It's great that your hair is holding up! I've lost all hair except a fine layer on my arms, weird! My head still has nubs as I didn't shave it. Oh, and one quite long hair on my big toe! (TMI??? lol) I'm mainly using scarves, but I figure once I move away from chemo and rads, I'll want to feel less "sick." Just ordered a longer human hair wig to see if I like it better than my synthetic ones.
Kelly, plan to hang in here to see how you are doing. Hopefully we may be able to even get together face to face!
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Dara, I had checked my profile a few minutes ago and it seems to subtract one day from both my second surgery and my chemo start date. What's up with that? Anyhoo, chemo started today. Everything went smoothly and my Neulasta pod is properly blinking green. I hope all goes well for you with your Rads treatment.
Ladies, how quickly after treatment does the metallic taste kick in? How soon do you start the salt / baking soda mouth rinse. (I'm on AC + T.)
Lyn
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Congrats Lyn! Hope all goes smoothly. I've heard that the metallic taste only occurs when the port is flushed and most say that comes during infusion. I also get mouth issues, similar to thrush about 3-4 days after tx and then get some sores also from the chemo at that time. Taste buds also pretty much went away for a few days, except I could taste sweet easier than savory. Everyone's different though so hard to tell. Do you have a port? I just used veins so never experienced the metallic taste. Are you taking claritin with the Neulasta?
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VLH, Metallic taste for me kicks in about day 3. I start rinsing about then with baking soda/saltwater. Drink lots of fluids even if they taste bad. Side effects all worsen when you get dehydrated.
Dara - you will do fine with radiation. Just expect the fatigue to continue for a while longer... Take care of your skin as much as you can early on, but expect towards the end to be pretty sensitive. I did 28 regular and 8 boosts (including lymph nodes).
BTW, I think (chemo)menopause may be kicking in. I am so warm ALL the time and can only sleep with a sheet. I used to pile on the blankets. I haven't had what I would call a hot flash (sweating) yet, but just so warm all the time. It should be about time for my next cycle, so I guess we'll see. I got the last one right before treatment 2 and it lasted 2 weeks!
Dara - you will do fine with radiation. Just expect the fatigue to continue for a while longer... Take care of your skin as much as you can early on, but expect towards the end to be pretty sensitive. I did 28 regular and 8 boosts (including lymph nodes).
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Hi Everyone:
I don't post often but I appreciate all of you and have learned so much. I will always be filled with gratitude and continue to send you all good thoughts each day for health and happiness.
I have a question about a rash SE. I'm doing 12x Taxol, Carboplatin, Herceptin and Perjeta and I've completed 9/12 rounds. I'm wondering if any of you have experienced a rash on your hands and arms. My MO seems confused, which is a bit disconcerting. It's completely red and is concentrated around the knuckles on my hands and my elbows - although the rest of my arms look almost like I have measles. Additionally there are also areas that itch and those seem to be the sun-damaged spots that I was told are being "treated" by Taxol, but that's a different thing . A corticosteroid creme is doing nothing for this rash and it continues to spread each week. My MO made a comment that it may be from Herceptin which won't amuse me too much since that goes til next Aug. Has anybody had anything like this?
Best wishes for a good week. Sending love and light.
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Willa, have you looked up hand/foot syndrome? Could it be that? I am not taking your particular cocktail and have not experienced it, but I have seen several mention it.
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Willa, go back a page or two and look at Sensitiveheart's post. There is a picture o a rash that you could possibly compare. Caligirl also has had a rash. Hope you get to the bottom of things.
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Thanks for the responses, Dara and Kechla.
Lyn
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Dara and Kechla - thank you so much for your responses. I did consider hand/foot but I'm pretty sure that's not it. I did see Cali and SensitiveHeart's posts re rashes- thank you! I think I'm still searching...
Have a lovely night everyone.
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OH FOOY!!!! I failed my blood test, so session is put off for another week. Everything was screwed up, RC, WC, Platelets, if is was down another 5 points, I would need a blood transfusion. On top of that my taste has gotten wonky... Good think is, I have lost 7KG in a month.. I'm chubby, so that is a good thing.
Good luck folks with the rest of this week.
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Elizabeth, so sorry for the test results! Hopefully things will come up in the next week. Be super careful!
Lyn, at the very beginning of this thread, another bc sister talked about drinking pickle juice during the flushing of the port to avoid the metallic taste. It seemed to work for a few people. Sounded very strange, but maybe it had something to do with the vinegar or pickling process. Just a thought.
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Wow so many posts ... Go away a day and fall behind.
barbarau55... Happy Anniversary! So sorry you have had such a rough time of it your SLGD was your savior for sure. You have more on your plate with your husband and all ... Prayers for you.
Oasis2016... I have no idea but glad all is going so well with your calluses and keloid scars. Lucky you!
Dara... Love your dreams of not being recognized. I know how you fill about your wig ...I will put mine on just in the house and I wind up flinging it off. I sure hope I get use to it after chemo when I feel better and don't get these rashes on my head. I am so glad your last infusion went so well. Mine didn't go so well.
Jiffrig...sorry about the taxol & hospital stay ... That stinks.
Lyn....don't you love auto correct ... Hehe I never know what will come out. I kept having that with my dates too but I finally gave up on some of them. As far as rinsing my mouth I started already tonight when I got home. So far no sores just my warm mouth so I drink and eat lots of cold things and whoever told us about the little sherbet cups they are great ...cold and they taste yummy and I am not a sherbet lover. Thanks!
sensitive..... Welcome to my world, my doctor usually says after my calls its just the chemo but with my rash he did give me some Aterax to help my itch fest.
Kelly ... We are here to whine to each other and encourage and help each other. I know Dara & I will be here to support our ladies.
Kechla... Glad the cold capping & icing is working for you but I am so cold in the infusion room I don't think I could do it...I am the one requesting more warm blankets. My MO wants to see me throughout the surgery & radiation phase and then every 3 months for a couple years then every 6 months for a few years. I can live with that...more ways than one I hope.
willa216... I had a horrible rash last treatment and the doctor gave me Atarax to help and I bought lots of anti itch creams ....about 4 different types. My friend made me a cream that helped the most.
Oh Elizabth ... So darn sorry for you ...again!
My #4 and last chemotherapy was today. After meeting with my MO to go over blood work and next phase I headed to the chemo lounge ..apparently MO was hungry because in a short time he went to lunch without sending med orders to the chemo nurses. So we set for over an hour. The nurse in training took my case & after 3 attempts at my IV we both requested my regular nurse Heather ...who in one poke I was set. Theyfinally started fluids then all the premeds. Finally get started a little behind schedule. Then nurse in training takes one of my chemos off and starts the next one so nurse Heather notices my meds stopped still had too much in it so nurse in training panics and after being told gently to clip off new chemo and reintroduce the one that needed to be finished so more time running behind. By the time I finished it was just Heather still working so I got a hug and I was ready to run out with my DH and that's what we did.
Hope I can rest since my steroids have me bopping around the house doing stuff.
Love & hugs, Vicki 😘
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So glad you are almost done. I went for my 7th chemo yesterday (would have been 3rd of Taxol) and when my onco read my journal about my side effects and the neuropathy I am experiencing, he canceled treatment. He said the risk outweighs the benefit. He said that neuropathy can be debilitating for life and by stopping the taxol now increases my chances of metastasis by only 2 percent. For me being a stage 3c, every two percent counts, but I have to trust him. I asked him if I were his wife would be recommend the same treatment, and he said absolutely. He said after radiation, we will sit down together and talk about the aromatase inhibitors, which he feels is the most important part of my treatment. I'm scared and worried about whether discontinuing treatment is the best thing to do, but as my husband says, he is one of the best oncos in Phila. and knows his stuff. I also feel like such a failure because I was not able to finish treatment. I met with the radiation oncologist yesterday and will have a ct scan on Friday to decide whether I can have proton radiation vs. photon. Also have to have a bone density test. I forgot to ask onco about whether I should be taking any supplements. I know mtg Vit D is low. What type of supplements do you take?
I did ask him about a flu shot and he said now that you are not on chemo I can go ahead and have it. Never took one before so I think I will wait a week until I am feeling better. Still nauseas from the taxol given 14 days ago.
Hope you gals are holding up well. Proud of all of you and congratulations to those that are finishing.
I never even got to ring the bell. So disappointed in my body,
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Oh Marlenelin...don't feel disappointed in your body ..it has been through more than most bodies ever go through! My MO said he would give me my flu shot November 1st my chemo was yesterday he felt that was good amount of time. I never got to ring the bell either but I just wanted to get the heck out of there 😳
Interesting fact I finally listened to the recording of Dr. Hope S. Rugoi MD you told us about
Lyn and she mentioned Gabapentin was being used for neuropathy during chemo. I already use Gabapentin for numerous neck & back injuries and herniated disk pain ... Maybe that is why I haven't experienced any neuropathy so far?
Have a good day y'all
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Happy last chemo! Hope everyone's chemo treatments are going wel
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Woo Hoo, Sensitivehrt!
I remember the pickle juice, Dara. I didn't have a problem with a metallic taste during the port flushing. Rather, I was thinking of onset of the bad taste, which I guess is maybe the thrush.
Vicki, yikes on the MO going. to lunch without leaving orders, but it must be such a relief to be done with chemo!
ElizabethAM, I'm sorry that the blood test results will delay your treatment. :-(
Lyn
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today was my supposed fourth and final chemo. MO surprised me saying she thinks I can do two more. Meltdown, recovery, accepting.i asked if I could see how I feel after 5 and she said sure. This delays the plan by six weeks. So radiation now won't start till January. And we marchon.
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Love the picture sensitivehr... I will try and post mine..lol Whoot whoot ..Last chemo 👍🏼
SusanaQ... I can't imagine the disappointment ... Just before my 3rd chemo the NP mentioned after my surgery they were going to do 4 more chemo treatments before radiation ...my heart dropped. I said WHAT?? That was not part of the plan ... So she starts reading over the MO notes and said she made a mistake. I did double check on that for sure. So sorry!
My Nuelasta pod infected the meds a couple hours ago, I took my nausea meds and wait for misery to set in about Friday!
My son and his family drove in from Las Vagas.. I was so happy to see them but I'm pooped from a busy day of company in and out since the rest if the family all stopped by to see them. They drove back home tonight.
Rest well ladies
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Sensitive -- Awesome photo... Really love it.
CALI, CALI, CALI !!!!! YEAH ON FINISHING YOUR CHEMO!!! THAT IS AWESOME!!
DARA, DARA, DARA !!!!! YEAH ON FINISHING YOUR CHEMO!!! THAT IS AWESOME!!
MARLENE YOU GET A CALL OUT TOO, FOR NOT HAVING TOO DO MORE CHEMO.
CALI --- I hope the problems with the Nuelasta are minimal.
Susana -- Sorry for your disappointment. I hope it turns out ok.
Last night I spiked another fever and went to the hospital. Happily this time they did not keep me, but gave me an antiboitic and sent me home. Happily the blood tests showed that my blood was rebounding... So it looks like I will be able to do my treatment next week depending the outcome of the blood test.
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Elizabeth, so sorry for all of your problems. Do they know why you are having so much trouble? How far along are you? I was hospitalized for the first time last week for dehydration...no fun. I just have 2 more DD taxol to go, so toughing it out. Good luck
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