Who is starting chemo in September 2016?
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MY TONGUE IS BLACK!!!!
I am freaking out! I called my nurse navigator and told her...she say that it is a side effect of Chemo...I said but my tongue is black...she said that don't worry the color will come back, that its not permanent...so I was like...my finger nails are black..my hands are black..my feet are black..now my tongue is black...she started to laugh a little bit...I said its not funny...she said I know..I am soooo glad to be done with A/C...omg!...I am super nervous now about how the Taxol is gonne affect me.
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Nayda985 - Wow, that is crazy! I hope it gets better soon....
Smilethrupain - My surgery has also been planned for 4 weeks after Chemo. I am scheduled for Feb. 2nd and I am pretty nervous about it. I wish I could offer you more but I just wanted to let you know that I feel your pain.
Bagsharon - I had wicked pain from the Neulasta shot. I usually have it on a Wednesday and by Friday I am in so much pain. I have been taking Claritin to help with the pain but it does not help. I usually take claritin the day of the shot so this time I am going to take it days before. I honestly feel like I have been run over....hopefully it will help.
ACS74 - I am so glad you wrote about the eye twitches! My right eye has been twitching for 24 hours....it is driving me crazy. I never really thought it had anything to do with the chemo but you never know!
I am on my strong week this week. I start my third round on Tuesday and I am not looking forward to it -
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misslil--Have you taken ginger capsules? I forgot to mention that I also took those twice a day starting the day before chemo continuing to day 5. I don't know if everything I did (ginger, patch, and sea bands) prevented the nausea for me or if I just didn't get it. I wish you good luck and may this pass for you quickly! Hugs!
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Let me rephrase my question. I'm trying to find out if anybody else who is experiencing bone pain from Neulasta also has high white blood cell count.
Normal white blood count should be between 3.7 and 10.8. When my pain was the most severe, my WBC was 14.7. When my pain was moderate it was 13.2. This last time my pain was quite manageable and the WBC was 7.2
I'm wondering if I'm being overdosed on Neulasta and that's why my pain is so bad. Maybe I don't need it at all.
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bagsharon - you might want to see if you could skip neulasta the next time and see. I didn't get neulasta on my first infusion and my count was too low to get #2 on schedule. So #2&3 I've gotten it and more side effects too. MO gave me the option to not get it for #4 but warned of another delay. I'm hooked up now for my final AC and will get the neulasta. I'll deal with a couple of days of SE rather than delay. I will probably ditch it for the taxol though...supposedly WBC issues isn't as bad on that one. Would love to know if someone hears different....REALLY don't want to be delayed any more
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Hello All
Had my 2nd treatment of TCHP (this is my 1 good week) next Wednesday will be the 3rd treatment. I have a wig..just wanted to know those that are wearing wigs how do you keep it secure? Seems like if I shake my head it moves like it's going to fall off ( so embarrassing). If any one has any tips please let me know.
Thanks
Hahlyn
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Hello Everyone!
I started TCHP on September 2 and will be getting my 4th treatment on November 4. Most of my SE's have been limited to hair loss, heartburn, black thumb nails, and the big D, but after this last one 2 weeks ago I think I'm developing neuropathy in my hands and feet, and well as itching (kind of all over) and occasional twitching of the eyelids and my upper lip. I'm hesitant to mention the Itching to my MO because I don't want him to change my dose of chemo (I suspect this is being caused by the Taxotere).
So far I haven't needed any Neulasta injections (knocking wood loudly, lol) so I can't help with any questions about that.
Good luck to everyone with their next treatment, I'm so glad to have this forum to come to whenever I have a question or concern. God Bless you all!
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DocMama - I am on the exact same schedule as you with TCHP and have also noticed neuropathy in my feet over the past week. neuropathy
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DocMama - I am on the exact same schedule as you with TCHP and have also noticed neuropathy in my feet over the past week. No itching or discolored nail beds (I have acrylic nails) Neuropathy is one of my most worrisome symptoms as I know a few patients that have had long term issues after chemo. I have a Dr appt on Monday and will update you as to if my Dr recommends any adjustment in treatment. I'd hate to have to change my treatment as I know it's working, but I also like the feeling in my feet!
Have a great weekend Everyone- All the best!
BeachBabyK0 -
Nayda--how did Taxol go today? Thinking about you!
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Hello ladies😁
First off..... I got my MRI results today... My tumor is definitely shrinking by a lot....i am so happy!
Seq....i got there today and everything went smooth... They accessed my port with no problem.... Went up and spoke to the nurse practitioner and my nurse navigator....told them my concerns about this new chemo.... They said that I can take the vitamin B6 and the L Glutamine to combat the neuropathy....but they did say that it doesn't affect everyone this way... That everyone is different.....showed them my black tongue.... They told not worry the color will come back.... I was told that I am done with the nuelasta shot also.... I am so happy about that... I had real bad bone pain... Glad that's over.
I finally went to infusion....they did my premeds first... A steroid... Nausea medicine... Benadryl...Pepcid...ran those and when they finished.the chemo nurse told me she gonna let them drugs marinate first in my body before giving me the Taxol.... After 30 minutes she came back and started up the Taxol.... The Taxol ran for an hour...the nurse kept closely monitoring me... I asked her what was going on.... She said some ppl can't handle Taxol so that's why she kept coming over... I said... Oh OK.... But no lie I was fine... It kept making me have to go pee.. Like 3 times...lol..but that's it... After the Taxol finished... We had to wait 30 minutes so she could monitor me to make sure I had no bad reactions to it..... After 30 minutes she told us bye..... I see Taxol ain't no joke...
I am at home.... With no chemo flu.. Thank God... And I honestly feel good....just a Lil fatigued..... But not bad like I did with AC...i have no appetite though.... I usually feel bad right after infusion and super hungry.... And crash afterwards. I feel like I just had chemo.. But I don't feel bad at all... Just tired and thirsty..i can see why they say it is mild... I can feel the difference lady..... I hope yours goes the same way.... Pls post how your first one goes 😊
1 down 11 to Go!
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Misslil, I was going to mention a Sancuso patch. I have IBS so my doctor had offered the full arsenal of anti-nausea meds. I hope the Compazine and/or Ativan plus transfusion do the trick.
Michelle, I'm only a week behind you now on the AC. We've both had more than our share of delays. My mom battled c. diff for the second time recently and it's miserable. I feel so bad for you.
Lyn
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Bagsharon, I had such a strong reaction to the pre-infusion steroid (WBC 28), that they decided to lower my neulasta from 6 to 4 on my first infusion because my WBC was plenty high. And I've stayed at 4 for my subsequent infusions. I would definitely ask if you could get a lower dose of neulasta or go without it.
My bone pain and most my other SEs were so much worse with this last infusion #3. I don't know why other than I had bad nausea this round so had trouble drinking anything.
Also have a new SE, terrible itches with a hive rash everywhere! Driving me nuts. Nothing helped so PA gave me a steroid pack. She thought it might have been an allergic reaction to the doxycycline I was on for a skin rash (ironic), but I don't know. Steroid helps a bit but it still gets bad in the evening so I have to take benedryl with dinner and again before bed along with Ativan to knock out the itches. I don't know how my husband sleeps with all my scratching, but thank God for back scratchers! The worst is when my breast that is gone itches and I obviously can't itch it. And my fingernails are so sore and when I itch they feel like they're coming off--hurts but can't stop scratching the itches. Hope it's not an allergic reaction to the chemo--didn't get it until day 10 after 3rd chemo round. Anyone else getting this SE? I don't usually get hives
For my 4th and final infusion (yay!) this Thursday (boo not ready), they're giving me 3 hydration IVs every other day along with an IV with my neulasta shot after my chemo--so we'll see if that helps.
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Bagsharon, I checked my labs, and my experience is the opposite. Last time, when I had the cold, my WBC was 11.8. And that is the only week the bone pain was manageable. This time around, I'm at 7.9,and the bone pain is just excruciating as it was the first time. Plus neuropathy in right hand and knee, just makes me feel miserable ...
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VLH, thanks. I'll put that on the list to ask about later if I need more. I hadn't heard of that one.
Nayda985, congratulations on your MRI result!
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smilethrupain, thank you so much for your feedback. My patient portal puts all my lab work in a spreadsheet and I can even graph the results over time. I keep looking for patterns (job hazard) but I have nothing to compare it with. I'll stop going down that rabbit hole. Regardless, my pain has become manageable over time and I only have one more infusion to go!
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Bagsharon, one more left for me too.But 3rd one was worse, despite Accupuncture, nausea and bone pain are just bad..
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hahlyn- when I wear my wig, it's been staying pretty good (once I lost most of my hair). Prior to losing my hair...it moved around a lot. My wig lady also gave me double-sided wig tape to attach to my head & wig, but I have had to use it yet.
4th & final AC was completed on Thursday yay! Which of course means I wound up in ER later that night for my crazy rare hyponatremia again boo! 4 for 4! Got home last night & so far feeling ok. Getting my neulasta shot later today...hoping by getting it on day 3 it doesn't screw anything up.
I will start reg Taxol (12 weeks) along with herceptin & Perjeta on 11/10...also my 50th bday. I've decided to skip my bday this year & celebrate next year, cause sitting thru a 7 hour infusion would not be my first choice of bday activities.
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Nayda--that's all wonderful news! I hope I am as lucky on Friday. I was told to take B complex twice a day, B6 once a day and vitamin e once a day for the neuropathy. Are you icing your hands and feet too? They originally told me that definitely helped with nail problems and neuropathy. Now they are saying they aren't recommending it because there is no scientific evidence that it works. I'm still doing it.
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MissLil.......Thank you!
KD...Congrats on ending AC!!
Seq....I am going to take Vit B6 and the L Glutamine...I have decided not to do the icing b/c I hate being cold...So I hope these two supplements work for me....Pls post your first Taxol and icing for us lady
Day 2..and I am feel fine....other than the D has started...:(....but other than that just fatigued...no nausea...with the AC I would be in bed all weekend long feeling like crap..and having bone pain all weekend and week...but today I went to breakfast with my kids and mom and brother and his kids....went and did a little shopping...washing clothes...I am able to be more active with this Chemo than the last one....hope it stays this way with all of them
Happy Halloween All!
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Nayda--I will.
I'm convinced that AC #4 was the absolute WORST!!! No nausea or anything like that. Just feeling HORRIBLE all week. Had a fever last night. Almost got taken to the ER. Still low grade today. I've slept most of today which is strange considering this is day 9. I can't believe the level of fatigue I have had with this round. They said it might take an extra day or two to recover from it. Try an extra week! Geez!! I slept most of today with no energy to get anything done at all. Also having some weird pains in my feet. No tingling or numbness but I hope this isn't the start of neuropathy. I know it is a SE of the Adrimyacin and they ask me at every dr. visit if I have had any.
Best wishes to everyone with their continued treatment. This can't be over soon enough!!
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Had Chemo#3 on Thursday. My 1st one was at 100%, then the second one was only 80% due to my liver enzymes and the doctor being cautious. The 3rd one was at 90% and the fatigue set in a day earlier and stronger than before. Not looking forward to #4 at all. Then, I'm not sure what. The doctor is going to decide then. (I like to say he's just playing a guessing game with me, but really, I guess it is a good thing if he's keeping the options open.)
I made the mistake(!) of asking what I could take for headaches since I was being cautious about tylenol due to the liver. That made him concerned, so he ordered a head CT to check for any tumors in there. I have the same type and kind of headaches that I have always had. Caffeine headaches, stress headaches (my MIL came for a visit), and once or twice a year a migraine. So, that test was on Friday. Quick and painless, and I suppose that it is good to rule out anything going on up there. But, if they find anything, I'm going to be seriously perturbed!
Anyone following through with Halloween costumes this weekend? I bought a purple wig, but this is my bad weekend and I will be playing couch potato.
naya985 I bet you could really freak out some people with your black tongue! (Just trying to make lemonade out of lemons here, it does sound like a horrible side effect. Hugs)
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Lol....bet I could...with a black wig to match @ NotTheBoss ...lol
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Smilethrupain, sorry for the slow response about your concerns about getting surgery 4 weeks after chemo. All I know is my MO gave me the green light to get full hysterectomy (uterus/ovaries/fallopian tubes), Uni-mastectomy, and bi-reconstruction at the same time, 4 weeks after my last chemo. Gave up on doing all three surgeries at once since I could not get all three surgeons coordinated before the end of the year so Im going to do the hysterectomy first.
I think stress has a lot to do with recovery, so consider the help from your mom and school break and the kids being off helping your stress when you make your decision...you know what I mean?
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Well, I spoke too soon. I was super sick last week, ended up in the ER again. Spent about 7 hours there and have been feeling better and better each day. Still very tired but doing much better. Goodness, I will be glad when this part is over. I think I am waiting too long to get help though, next time after about a day of being sick I will be going in. I went back to the clinic twice after treatment for hydration but that doesn't seem to have helped very much. My house is a huge mess and I could do nothing for days. Oh well, here is to feeling better and getting things done while I can.
I hope you are all doing okay and I am sorry I got so far behind (again).
xoxo
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Well, here we are 13 days out from Emily's 3d treatment and everything is going as well as can be expected. She and I spent most of both days in the garden during a beautiful, warm weekend here in NC.
She continues to struggle with neuropathy in her hands and feet, but it started getting a little better yesterday. The problem is that the severity of the symptoms is getting worse and lasting longer with each infusion. She has started the L-Glutamine (along with the B6). Hope that helps. I'm massaging her hands and feet at least once a day to keep circulation going as well.
It is the same with her taste buds being out of whack too. Starts earlier, lasts longer. She has the eye twitching thing mentioned earlier by a couple of you. We also thought it wasn't an SE from chemo. I guess we were wrong.
Our youngest daughter is flying in next week to spend a few months with us to help around the house. She has two daughters, aged 4 and almost 2 months. We are really looking forward to that!
Best to all of you!
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Sam13 Emily and I have the same type of BC (ER/PR negative, HER2+) and are on the same TCHP treatment, although I'm a bit ahead of her as my 4th will be this coming Friday. I hope all is well with her. I've been managing ok, I've been able to keep working with some shorter hours. My SE's also seem very similar to Emily's as well. It's good to know about someone else following the same path in treatment as I am. I wish nothing but the best for you and Emily. She has her Sam, I have my Bill in my corner pampering me and caring for my with love and tenderness just as you are! God Bless you both!!
Angie
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AngelaKS sorry about the side effects. Hope you feel better soon.
Lisbeth, thank you for the post. I'm meeting the PS Thursday, want to get her full info. My MO gave the green light. My only concern is that right now I feel so weak, and I've noticed that the scraped knee hasn't healed properly in 10 days (it looked fresh for the first week). So it makes me think how would more profound injuries heal with more cumulative impact in my body. So, are you done with chemo?
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hello all....my laptop is still dead. Sorry I have been so quiet. Tomorrow is my 3rd AC treatment....finally. C diff is gone as is the port infection. I have been keeping up with all of you and hope you have had a happy Halloween.
XoxoMichelle
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Hope everyone had a great Halloween!
Michelle congrats on kicking the cdiff and port infection! You have had one obstacle after another. Hope it's smooth sailing from here on out, knock on wood.
Smilethru, wow that is worrisome if you're already having healing issues. And the surgeon's nurse is the person to listen to as they are the ones dealing with the issues after surgery. I have my final chemo this Thursday. Excited for last one but scared after round #3 kicked my butt. I'm also worried about this allergic reaction I'm having to something, still breaking out in hives daily. Hope it's not the Chemo.
I wonder if the relief of chemo being over will speed recovery--seems not having another chemo hanging over my head would help when dealing with SEs. We'll see.
Sam/Emily, my MO suggested Alpha-Lipoic Acid for neuropathy prevention. Along with B6. But definitely check with your MO as I read somewhere it can interfere with some types of chemo.
Has anyone read Anticancer A New Way of Life? I've started it and really like it but my chemo brain wanders unless I'm reading fast paced fiction, so haven't gotten very far. I like that he advocates alternative medicine for preventing cancer but doesn't poo poo chemo once you have cancer.
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