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Chemo starting December 2017

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Comments

  • Hariry
    Hariry Member Posts: 100
    edited February 2018

    Mjb I'm so happy for you! After much ups and downs dear.. zero lymph nodes! That's amazing.

    We hate AC that much all of us but the fact that this nasty thing kills c cells, it is proven in your case. Courage to everyone

  • LAMinders
    LAMinders Member Posts: 22
    edited February 2018

    mjb- yahooooooooo!!!!! Sending huge congratulatory hugs.

    Alright ladies- I’m in the waiting room for my 4th and FINAL treatment! Say my mo yesterday and he ordered an increase of zarxio shots with the hopes that it will keep me healthy and out of the hospital. He also showed me the ct scans and explained why he is confident that it shows pneumonia (looks like a spray of particles from narrow to wide, like out of a spray bottle) and not cancer (defined round-ish shape). Sooooooooo relieved!!!!!!! He also said my chemo restrictions on food and drinks are lifted 2 weeks from today. Can’t wait to celebrate with a big salad, fresh fruit, sushi, and a glass of good wine!

    Happy Friday ladies. Hope your weekend happy, relaxing, and side effect free.

  • mjb1018
    mjb1018 Member Posts: 151
    edited February 2018

    Diveslikeagirl - THANK YOU! I'm so excited to not have to have Taxol. I was so surprised that cutting it was even an option. Are you almost done with your regular Chemo? I'm feeling so much better everyday and so grateful to not have to deal with what Taxol may have thrown at me. :)

  • mjb1018
    mjb1018 Member Posts: 151
    edited February 2018

    Gigicommon - Thank you so much! I'm feeling pretty awesome today. BOOM! :)

    Hariry - Thanks! All of the nastiness of AC was certainly worth it! Now, I can keep feeling better each day. Yay!

    LAMinders - Thank you! Yay, you are on your last one! So happy to learn that your CT is normal...well, except for pneumonia! That stinks, but such great news! Ha ha. I had to be on antibiotics two different times during my 4 AC treatments, and I haven't had to take any for years! Our bodies get so fragile during all of this. It's been 4 weeks since my final AC, and I'm ready to enjoy a few celebratory cocktails this weekend! Ha ha! My eating habits were almost non-existent during chemo...had a few hungry days, but that's it. So, I didn't really miss anything. My appetite is good now and things are tasting good again. I have so many things on my 'want to eat' list now. Feeling better every day. ENJOY!

  • diveslikeagirl
    diveslikeagirl Member Posts: 69
    edited February 2018

    mjb:  I think it's a wide understanding that the taxanes (taxol, taxotere) are the culprits for many of the nastiest SE.  So not having to do Taxol is clutch.  It looks like you'll be doing Herceptin; will that be for like almost a year?  I get Herceptin with my full chemo every 3 weeks and then just by itself on the in-between weeks and I can't attribute any SE to Herceptin alone.  Then when I'm done with the chemo, I'll get Herceptin for the rest of the year on a 3-week schedule.  Today when I spoke with my PA, she said that my current Herceptin dose would be increased times 3 and they still didn't expect any SE.  I guess that's one of the reasons they call it a silver bullet drug (in addition, it's action is not to kill cells, but to mess with the receptors ON the cancer cells). So I'm optimistic for you with your Herceptin only treatments.  

    Feeling better each day, what a concept.  Today was full cycle #4/6 for me and I was happy to see that although my red blood cells may be going down a little, so far not enough to put the treatment schedule into question.  

    Love seeing good news in this group.

    Mindy

  • pinotgirl
    pinotgirl Member Posts: 1
    edited February 2018

    Anything to help with joint pains? I made it through the 4x AC without much trouble (good drug regime from MO team), however this week I started Taxol and have horrible joint and muscle pain. Tried epsom soak and Claratin-D and ibuprofen but doesnt really help. Any suggestions? My PT says it often settles into areas of previous trauma and I had a severe sprain this summer which is exactly where it hurts worst now. Aargh. I was so worried about neuropathy but got myalgia instead.

  • mjb1018
    mjb1018 Member Posts: 151
    edited February 2018

    Diveslikeagirl...Yes, I am so happy to not have to have Taxol! My Herceptin will be every 3 weeks for 10 months. That'll give me a full 12 months of Chemo. What year 2018 is!

  • Dark13
    Dark13 Member Posts: 50
    edited February 2018

    Hi Everyone... warm hugs from the Caribbean. Taxol so far has not been as bad as the AC. The bladder issue tho' its is real I have been peeing myself regularly and the flatulence really bad (lol)... has anybody been farting more than usualHappyI feel for those sitting next to me cause its not pleasant but hey there is just no control...try as I mught I can't hold them in or squeeze them out easily....oh dear TMIBawling

    Went out this weekend rocking my bald head, got glammed up. I looked gorgeous. I felt like a queen. My skin looked flawless must be all that juicing.

    mjb-that's great news....I am so happy for u I can't stop grinning.

    Laminders-pneumonia better than the 'C' word so thats +ve news

    Hariry, Gigi, Ejean, Danzi, GenevaC -how r u girls?...hang in there we are almost finished...

    Stay strong my lovelies....."the race is not for the swiftest but for those who endure to the end"....We Can Do This......1 Cycle at a time.....

    Dark13


  • GenevaC
    GenevaC Member Posts: 38
    edited February 2018

    dark13 - love the thought of you rocking your glam bald head! We’ve got a mega cold spell here, so I’m wearing double hats. But the daffodils are poking up and hopefully spring is close. And yes, taxol makes me pee. Hard to keep hydrated. However no farts - my gastro discomfort ended with AC.

    I have taxol #5 today and side effects have been very manageable. But my new foob is bigger than my remaining breast and I’m going to have to be a bit creative to figure out a solution. I’d so rather an ‘off the shelf, ready to wear’ easy thing.

    Hugs to all

  • Gigicommon
    Gigicommon Member Posts: 58
    edited February 2018

    Hi Dark13! I was inspired by the Black Panther's Dora Milaje (and some decent weather) to free my head from all constriction this week. It felt good to not have something covering my scalp at all times.

    I'm trying to ready my mind for boarding the Taxol train. My first Taxol & Herceptin infusion is tomorrow and I'm praying that it is better than AC.

    Thanks for the warning about the potential peeing and flatulence. So much to look forward to! 😊

  • Daniz1983
    Daniz1983 Member Posts: 84
    edited February 2018

    Hello Dark13 and ladies, I haven’t started Taxol yet. 😳😞 I start this Friday. MO gave me 3 weeks break instead of 2. I am NOT looking forward to anything I just am freaking out. I honestly can’t even write or do anything. Been super depressed and feel like the light at the end of the tunnel is FAR away. It’s crazy I have good days and bad days. I am praying there is no nausea with Taxol. Hope all of you are doing well

  • Gigicommon
    Gigicommon Member Posts: 58
    edited February 2018

    Daniz - I completely understand how you feel. Tomorrow is my first Taxol (I am scheduled to have four, every other week). It is hard to go back for another infusion when I am just really starting to feel good again but I am embracing the idea that this ride will be an easier one. I'll let you know how it goes for me.

  • Hariry
    Hariry Member Posts: 100
    edited February 2018

    The other day when SE of the last AC was over my DH was trying to encourage me- it's half way done. I won't let him continue with the word taxol, let alone picturing myself going to the chemo room again. (Yes, the daycare has a room where I was always stay) Another twelve?! How am I going to finish all these??

    A friend (happened to be a priest) then suggested to try a new dish, in a new eatery/restaurant after completing each cycle. Make That a reward. That sounds something encouraging why not we give it a try, Daniz. Looking forward to gastronomic experience x12. Of course make sure the restaurants are good. So, ladies, I'm gonna start with an iberico specialist next week😉

    Anyone having dark lines beneath their nails? Mine is clearly showing three now, I guess four by end of next month, marking the "killing time"of chemo.

    Gentle hugs to all

  • GenevaC
    GenevaC Member Posts: 38
    edited March 2018

    Daniz, Hariry & Gigi - I remember those feelings so well after AC. I couldn’t even visit this site, anything about chemo was too much. Being told my ‘excessive’ reactions were common with AC helped me a lot. And they did fade as I got used to taxol.

    “ half way” isn’t much comfort when it’s already been hell. I’m trying to just go day by day

  • Daniz1983
    Daniz1983 Member Posts: 84
    edited March 2018

    GenevaC, how have you been handling Taxol? How has it been thrurthfully now that you have had several rounds of t? Agh I start tomorrow. I’m nervous. I’m supposed to talk 5 steroids tonight and 5 in the morning. My goodness 5!!!!!!!! Seems like a lot. I know this shouldn’t even be on my mind but it is I really don’t want to gain weight on these dang steroids!!!

    What’s everyone doing on their nails?

    I read so much. Tea tree oil. Dark nail polish. Nail strengthening polish. I don’t know what the right thing to do is. I’m icing my fingers and feet for sure but anything extra I guess.

  • mjb1018
    mjb1018 Member Posts: 151
    edited March 2018

    Oh my goodness! I'm joining the Taxol club, after all. I met with my Oncologist today...He had an oversight during my last appointment. When he read my surgical path report, it had slipped his mind that I had already had a lymph node biopsy pre-treatment and it was positive. So, he said it is best to stick to the original diagnosis and treatment plan. Like this whole journey, I wasn't really surprised. A bit bummed, but grateful and relieved, too, that we are doing absolutely everything to treat my cancer.

    Daniz - WE CAN DO THIS! I'll be thinking about you tomorrow, too. I seem to recall someone else starting Taxol tomorrow, too? I don't remember..

    Pinotgirl, how is your pain doing? My MO said that's pretty common for a few days after Taxol. He told me to take pain meds if I need to. So, if the OTC stuff doesn't cut it for you, ask your MO for something stronger. Gentle hugs.

  • mjb1018
    mjb1018 Member Posts: 151
    edited March 2018

    I don’t know if I mentioned this before, but after AC #4, my fingertips and heels were tingly and painful. One thumb completely peeled off and “web” between my thumb and index finger cracked and peeled away. It’s been a month since my last AC, and just today I noticed one of my heels is peeling away! My oncologist was surprised it’s happening this far out. It doesn’t hurt or tingle anymore, just icky. Ha ha. Anyway, just found this article if anyone has experienced the same...http://www.breastcancer.org/treatment/side_effects/hand_foot_synd

  • Dark13
    Dark13 Member Posts: 50
    edited March 2018

    Hi ladies,

    Tomorrow is Taxol infusion #3 for me. So far it has not been as bad the chemo. I have no vomitting, no nausea, there are times like the day after when I go to the bathroom to poop but its not like diarreah. There are times when my mouth tingle but there no metal taste like the chemo. There is some tiredness but not like the chemo meaning I am not dragging about...and I am eating like ah damn horse.😊

    Danzi- the key is to take your premeds 'as prescribed' don't miss it, and don't mix it up...Try not to freak out. By now you should be feeling pretty good due to the 3wks break. Here are the positives - The Taxol infusion time for me is shorter than the chemo.l I find that I am very hungry. I can basically eat anything and not feel bad..that damn premed steroid...I dread putting on weight. Just today I made a conscious decision not to eat anything after 6:00pm hope that don't screw up my blood count. Right now i'm a slim 145lbs at the rate i'm going by Taxol #12 i'm going to be a heffer 😊. So far there has been no neuropathy. Thank God...Once you are feeling well try to keep active and hydrated. At the moment I can tolerate water but I am still drinking my gatorade..The negatives are a slight fever, hot/cold flashes (not sure if i'm going into menopause with this one😯) flatulence and peeing more than usual. It has been manageable. YOU CAN DO THIS THE WORST i.e CHEMO IS OVER...YOU DID IT, THAT PART IS DONE. YOU CAN CONQUER TAXOL TOO...one step at a time. Please let us know how you ard doing after the 1st infusion.

    Mjb-sorry you have to join the Taxol wagon but if its going to serve you best in the long run hop onboard cause together we going to get thru this.

    Hariry-During chemo my thumb nails on both hands and my index on my right hand turned black at the cuticles or nail bed. I did not put anything on it just left it alone it is slowly clearing up not sure if it has to grow out or if its just going to fade away. But looking at it I think its getting lighter. My tongue on the sides also got black but that has cleared up. Under my feet also got black not the toenails though (isn't that strange) anyways i'm not doing anything special just keeping the skin moisturized as the chemo really dried my skin out ...managing with vitamin E oil. (Note: All this was during the chemo phase). After chemo I felt the same way like I just had enough totally fed up of it all so I understand. I like the idea of rewarding yourself with something...I love to shop so i think i'm going to windowshop who know I just might find a bargain. Think of this stage as the "bad cells buster stage" just picture Taxol duking it out with all those bad cells and busting their ass ...eradicating it out of your body. This goes for you too Hariry. YOU CAN DO THIS THE WORST i.e CHEMO IS OVER...YOU DID IT, THAT PART IS DONE. YOU CAN CONQUER TAXOL TOO...one step at a time. Please let us know how you ard doing after the 1st infusion.

    Gigi-Girl, I was in full DoraMilaje swag...bald baddie☺ Please let us know how you are doing after the 1st infusion.

    GenevaC-I bought a breast form online "Braza Classic Foam Breast Form - S2015" so maybe you could check Amazon. I also bought some stuffing and using the bra inserts plus a stocking I made a fake boob to stick in my sports bra works pretty darn good too.😊 I akso went to a specialized bra fitting place and got fitted turns out the best fit for me is a 36A...note I bought the Braza 34B before I had the professional fitting. I use them both.

    Pinotgirl- Pls find out from your doc if Vitamin B12 and l-glutamine will help u with the pain. Once you are feeling well try to keep active and hydrated. One step at a time..

    Diveslikeagirl-Chemo#5 was tough for me, praying that it's not hard on you girl, just know thst the group is here just come on here and let it all out. Remember to take your meds don't miss them, take them on time...I lapsed with that and it was no fun..drink as much as you can and finally try to get some cat naps during the day.

    Stay strong my lovelies....."the race is not for the swiftest but for those who endure to the end"....We Can Do This......1 Cycle at a time.....

    I am on the hunt for a strapless mastectomy bra...can anybody help ah sista out by recommending a brand/site?

    Smooches & warm hugs Dark13


  • GenevaC
    GenevaC Member Posts: 38
    edited March 2018

    Daniz - I’ve done 5 taxol. Side effects have been peeing a lot, darkening nails, some fatigue and bloody noses. Maybe just a little tingling in my feet - it’s cumulative, so I’ll stay alert. I was prescribed 80 mg prednisone at first, but dr dropped it to 60 mg as I had no nausea. It’s ok but I’m fatigued thinking about how many more weeks to go. Hope AC fears fade soon.

    Mjb - hope first round taxol was ok for you! Sounds like you were super calm about the change in plans -strong woman.

    dark13 - Ameona has a strapless bra but I have no personal experience. My mom is coming next week and I’m going to get her help sewing some pads into sports bras and stuff. Read a thread on this site about making foob from shower puff thingy for swimsuit.

    We had 13 cm snow on Thursday and then a bit more today. Closed the airport both days and general havoc. But kids delighted. Walking them to school was major exercise. And I’ve done a little yoga this week. I’m recovering fromAC and feeling more able both mentally and physically.

    Hugs

  • mjb1018
    mjb1018 Member Posts: 151
    edited March 2018

    Home from 1st Taxol+Herceptin infusion. All went well! No reactions at all. Premeds were Decadron (steroid), Pepcid and Benadryl. At one point I was clenching my teeth, but drowsy, too. Ha ha. I'm grateful that I don't have to take and steroids in the days after, but I do have my other nausea meds if I need them. Total infusion time was almost 5 hours today, but that'll cut down or the rest. Herceptin will be sped up and I won't have to stay after for observation. Looking forward to the next few days to see how my body reacts.

    Oh, at the RO yesterday I found that they have a massage therapist who comes in once a week and it's free! They highly recommend it as it's been proven to help with pain and things. Especially since I'll be doing Taxol when we start. I'll be going for my radiation simulation soon...

    How'd it go Daniz? Hope all is well.

    Yes, Geneva, I just go with the flow...No biggy. I guess since I was expecting it all along I wasn't too surprised. I feel a sense of relief, too, that everything possible is being done.

  • diveslikeagirl
    diveslikeagirl Member Posts: 69
    edited March 2018

    Good evening, ladies.  Just coming off Week 1 of Cycle 4/6 and feeling like it's an uphill battle.  I know chemo is meant to be cumulative and some SE don't really manifest until later in the process, but I admit to still feeling angry that just when I think I can handle the SE, something new comes up.  This week it was darkening nails, which I had read from you all about, but which I thought I was going to escape.  My PA says no, it looks like you'll get some darkening but hopefully you'll get through the last 2 cycles and they won't lift and come off.   She recommended if they got bad to soak them in Epsom salts. 

    Daniz:  Back before DX, I added Brazil nuts to my diet ( not > 1 oz per day) because they are high in selenium and promote strong nails and hair (my nails stopped splitting).  I have added them again and hope it helps.  Google Livestrong/selenium/Brazil nuts if you want to read more.  Other foods like spinach, yogurt, oatmeal and eggs are also good sources.   

    Dark13:  I've got a love/hate feeling toward Cycle #5 (in 2 weeks).  I want to be done with this mess but it seems to take an extra day of recovery with every cycle.  I'm taking the meds faithfully and drinking water like a fish.  I admire all of you finished with AC and taking on Taxol.

    Mjb:  Sorry about you going on taxol but grateful that your onc caught his slip.  Kinda cringe about some of the randomness.  If I have a bad day/brain slip at work, no one misses a life-saving treatment. 

    Shout out to LAMinders:  Hope the pneumonia resolved itself and your SE are diminishing every day.  

    Have a low-SE weekend everyone.

    Mindy

  • Daniz1983
    Daniz1983 Member Posts: 84
    edited March 2018

    HELLO LADIES!! ❤️ As you can already tell I’m in a great mood. Today was Taxol #1 and it went so so so so well. Bless the Lord!!! I had no allergic reaction and no nausea. I’m still doin. Good and still don’t have nausea and it’s 10:30pm here. I was a nervous wreck even criedin the weighting room because I wasn’t doc yerrified. I took a Xanax to help calm me down.

    The infusion was ok. I’m not getting gatetoidsnin iv im taking a pill form. 5 pills night before and 5 pills morning of and then again like that before insfusion. Then they gave me anti nausea and 25mg Benadryl wow that Benadryl knocked me out ladies. I slept all the way through the infusion it was crazy. Got home and went to bed an hour later and literally slept for 3 hours. I think tonightnwill be a sleepless night hahaha 🙄🤣but heyyy who cares. As long as I don’t have avenue nausea.

    I am just hoping and praying the next few days will be like that too. I know and hear it's cumulative but I hope it will be ok.

    I went for an ultrasound though yesterday and wow my tumor shrunk from 3.2cm to 1.46cm. I was so happy to hear that praise the lord for the good results.

    Hariry I know you are scared because trust me I was like that too literally freaking out like there is no tomorrow and it was so smooth today I can't even compare it to anything close to AC.

    I really hope everyone is doing well and that this continues and that there are no more nasty side effects. 🙏🙏🙏

  • Daniz1983
    Daniz1983 Member Posts: 84
    edited March 2018

    Diveslikeag,Thank you so so much for the Brazil nuts recommendation. I’m terrifinitly tring that!!!

  • Laura644
    Laura644 Member Posts: 24
    edited March 2018

    hi everyone! I can’t believe I’ve been away for so long. I feel like such a wimp for not checking in. Daniz, I’m so glad that your Taxol #1 went well; mine did too. I threw up several times in the chemo chair waiting for the blood results to come back. A lot of anxiety. Thankfully they got the trash bucket in front of me time. They gave me Ativan and I too slept through the entire infusion. Unfortunately I had migraines on days three and four. Eventually I took Oxycodone for it end it helped so much . Next time I won’t wait...

    One of the reasons I didn’t write for so long was that I had PTSD during my AC number three and four and it was so bad that I would throw up if I smelled hand sanitizer or looked at my chemo bag. Even thinking about writing on the discussion board made me feel ill. Anyway, I’ve missed you all and I can’t wait to look through all of the past posts and Connect with you once again.

    Laur

  • Laura644
    Laura644 Member Posts: 24
    edited March 2018

    mjb - I wonder if you are still having trouble with mouth sores? I had a lot of trouble with them after AC #4 (feb 8). The MO had me come in so they could look at my mouth to see if it was thrush. The PA counted 12 sores in the back of my throat. I used Magic mouthwash which helped a bit, but there were some sores inside of my lip and cheek for which I used kanka - that helped keep me sane. I also ate soft and liquid foods for a while. And they told me to stay on Prilosec and Pepcid every day, period. Anyway, I was surprised that I had pain with swallowing after Taxol #1(feb 23). I have to stay away from spicy and citrus. Usually a glass of milk or yogurt will help me neutralize the pain.

  • GenevaC
    GenevaC Member Posts: 38
    edited March 2018

    Laura and Daniz - delighted to hear First taxol went well! The PTSD should keep fading, although I’m still afraid of ham sandwiches everything else is pretty ok. Even (mostly) going to the hospital.

    Diveslikeagirl - Sounds like you are in the worst of cumulative SE. but just think how valuable you are with all that platinum in your body ;) Hope you are out of the worst of this cycle.

    Another SE I forgot to list - hot flashes. This is actually from AC it seems but it took me until now to recognize them. I knew menopause/chemopause was coming with tamoxifen but I’ve just been dealing with each challenge as it comes. Psychologically, menopause and bald at 40 years is hard. Feeling pretty old.

  • mjb1018
    mjb1018 Member Posts: 151
    edited March 2018

    Laura, it’s so nice to see you back. I’m sorry you had such a rough time mentally. That is so difficult to control and turn around. Hugs to you! My mouth sores are all better. They were bad after #3 so I got the magic mouthwash for #4. It helped a bit, but is was so nasty to take that I had a hard time staying on schedule. I ended up with an infected tonsil (not strep)...I actually thing I scraped it with a French fry! 😳 Was having some chest congestion then, too, so was given antibiotics. That help d everything. I had Taxol #1 yesterday and learned it can cause mouth sores, too. Yay

  • Hariry
    Hariry Member Posts: 100
    edited March 2018

    Hey girls, hope everyone has been enjoying the weekend. I am gradually getting fed up with wearing my wig. Kinda hot and feeling the tightness(even though I've adjusted and loosen the band) So when going to places where no one should know me I'll just put on the beanie.

    Daniz, glad to know that your taxol went well that definitely gave me some hope -mine will not be too bad😂 I am less worry after reading your post.

    Mjb admire your positivity, yes, I agree, it's better to do more than less.

    Laura we miss you. Sorry to learn what you ve gone through. Difficult for sure. Hope you recover from PTSD soon.

    Btw, is everyone taking the supplements as recommended (by swewing if I m not mistaken)

    But why carnitine and glutamine? I thought these are for weight loss?



  • Daniz1983
    Daniz1983 Member Posts: 84
    edited March 2018

    Hello LADIES!! 💖 how is everyone? Glad to see we are all doing better and finally finished with AC!! That word AC makes me want to puke.

    Hariry, I totally understand tour worries and that’s how I was too. I honestly was tearing up in the waiting room and a nervous wreck all day. I took one Xanax in the waiting room before infusion time. The amount of Benadryl they gave me knocked me out and I slept all through infusion and all day. Woke up I was starving lol. Saturday had a headache took Tylenol got rid of it.

    But Sunday was awful the headache was insane. Is anyone else having headaches? Is this from Taxol or steroids? I am taking 5 steroid pills night before Taxol and 5 morning of. No steroids in port.

    Question!!!! What’s everyone doing for their nails??? To prevent them from turning black and falling off?

    Hugs!

  • mjb1018
    mjb1018 Member Posts: 151
    edited March 2018

    Daniz, I had a dull headache on infusion day and the day after. I only had the steroid during infusion as a premed. I don't have to take them by pill anymore. So, I assumed the headache was from either the Taxol or Herceptin. I didn't need to take anything for mine as it was pretty mild, but it's the first headache in quite a while. As for nails...I'm not doing anything. I'll just wait and see. :)