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October 2019 Chemo Club Members

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  • Kitkat8074
    Kitkat8074 Member Posts: 47
    edited October 2019
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    Welcome October Breast Cancer Warriors!! Sorry you have to be part of this group but we are happy you found us!!

    I pray all are doing well and the SE are easing. Update on my first round of Carboplatin and Gemzar...infusion went smoothly and all was okay the day after. Yesterday and today, not so much. Extremely tired, weak, nauseous and finding it hard to concentrate. The last part is probably due to the nonstop headaches I have been having since the biopsy on my tumor in my clavicle. The back of my head is tender to the touch where the pain is set. I feel like there is a bump there now, but could just be that I notice it because of the pain and soreness. It was probably there all along.

    MRI of brain was last night, so now the waiting again.

    On a different note, just ordered my team shirts for our breast cancer walk at the end of the month!!! Super excited to get them and pray I can make the entire 6 mile walk with ease but that will depend on how I am fairing after infusion, which will be few days before the walk!

    Hugs and prayers ladies!!

  • michelle94904
    michelle94904 Member Posts: 13
    edited October 2019
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    Hi Honey - yeah we didn't even know two Oncotypes had been submitted: Oncotype DX tests were done on BOTH of my tumors, but nobody knew that two tests were submitted. Usually with two tumors, the pathologist can find the cancer cell that looks scariest to send for testing. My two tumors looked identical under the microscope, so the pathologist decided better to test cells from both cancer sites than just one tumor, since the "scarier" one couldn't be determined.

    However, nobody shared that two tumors were sent in for testing, so it was not on anyone's radar. And when the no-chemo-recommended test results came in a week ago, score 9 (BY FAX - archaic delivery for a state of the art test!), nobody knew it was just one of two tests submitted, so the all-clear light was given and we started down the radiation path. Plus there is no docket of pending test results (another archaic issue to be addressed). Literally all the doctors and practitioners under my care were shocked when they got the unfortunate test results, score 29, not only because they didn't know a 2nd test was pending, but also because of the large genetic difference between the two results. But bottom line, my oncologist strongly recommended chemo, and I strongly trust her experience and recommendations, so I signed up on the spot.

    Trying to explain to my DH what chemo feels like - the worst flu ever without the temperature (although I have a 99 fever.) Ugh. What you'd expect if you ingest poison.

    Love to all. Had to miss the MVFF screening tonight, trying to use the BRAT diet to feel better. Stomach no bueno. Just took the RX for nausea/dizziness. Mom and sis are on their way to visit, will take an ativan after they leave and collapse.

  • michelle94904
    michelle94904 Member Posts: 13
    edited October 2019
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    Hey Kitkat - You ROCK girlfriend! So awesome that you have a team for a Breast Cancer Walk! And that you are going to attempt to walk the six miles - during chemo! xoxo SillyHeart

  • Kitkat8074
    Kitkat8074 Member Posts: 47
    edited October 2019
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    Thanks, Michelle, I do it every year since 2002 after my Mom passed away from Breast Cancer.


    How is everyone fairing since their treatment? Hope SE are manageable 🙏💕👍🏻

  • Maya12
    Maya12 Member Posts: 2
    edited October 2019
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    I had my first chemo last Wednesday- still feel very sick - as in “run over by a truck” sick, barely functioning :(. Took me two hours this morning to make my way downstairs, take my meds and feed myself. Somewhat disappointed because I was hoping for faster recovery.

  • Kitkat8074
    Kitkat8074 Member Posts: 47
    edited October 2019
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    Maya, I’m finding Carboplatin difficult as well. I sailed through Taxol and AC, so this is a set back I wasn’t expecting. Hopefully we find it easier as the treatments g

  • nanceliz529
    nanceliz529 Member Posts: 5
    edited October 2019
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    Was okay Wednesday and Thursday night but after the Neulasta release I had cold sweats, awful body aches and stomach discomfort throughout the weekend. Bright side no vomiting. Friday was when I really began to crash but today is the first day I'm feeling like myself again....hard to say what's from the actual TC and what is from the Neulasta. Feels like a really bad cold or the flu...but definitely feel like i got hit by a truck too.

  • Kitkat8074
    Kitkat8074 Member Posts: 47
    edited October 2019
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    Nanceliz, make sure to take Claritin, Advil and Zantac day of neulasta shot and day after. Every eight hours is what my MO said. It helped me.

    MRI results came back clear!! Thank you, God and all of your prayers. Now if they could just tell me why I have a headache all day, everyday, it would help. Tired of the pai

  • sondraf
    sondraf Member Posts: 1,605
    edited October 2019
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    Think I have to drop out of this group, ladies, as they are going to put me on hormone therapy first. I should have learned by now not to make concrete plans before they are finally done with diagnostics!

    Best wishes for good management of SEs and that everyone sails through with the nasties deleted from their systems forever.

  • DMHGF
    DMHGF Member Posts: 8
    edited October 2019
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    So I'm hours out of port placement surgery and 1st chemo treatment is at 9am tomorrow morning. Port is sore but relatively painless unless I try to lay down...any direction. Any suggestions? It may just be the recliner for tonight and brace myself for tomorrow.

    I am slightly terrified. I asked my MO for anti anxiety just in case but he said he didn't want me to use them. He gave me Ambien instead, saying I just needed to sleep better. I'm not one to take meds if I don't need them so didn't even fill it. I'm sleeping normally for me.

    I guess I'll just take some deep breaths and hope it doesn't suck as bad as I'm imagining haha.


  • Lschaack
    Lschaack Member Posts: 6
    edited October 2019
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    1st infusion was Thur Oct 3. Felt OK and functioned link a human being on both Friday and Saturday. On Sunday I was extremely tired, but managed OK. Monday muscle aches with headache and then Tuesday arrived. I was up much of the night with bowel movements. I would have cramps, then get up and use the toilet, then lay back down and start all over again. Next time I need to get ahead of the constipation issues by using a stool softener. This is the first time today that I have actually sat upright in a chair - otherwise I have been horizontal. Does that mean I have turned the corner? Time will tell. As my diagnosis shows, I had breast cancer 15 years ago - I never remember feeling this bad . . . but likely I did, you just forget.

    I just want to say that I feel like I got hit by a bus, and have a bad hangover all while experiencing the flu. Sound familiar?


  • michelle94904
    michelle94904 Member Posts: 13
    edited October 2019
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    So I've been playing with the Canva appwhen I'm trying to express all the chemo feels... just made this based on @Lschaack's great comment above. Hope you enjoy. (hope it's ok to spread this! You said it perfectly!)

    image

  • Lschaack
    Lschaack Member Posts: 6
    edited October 2019
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    perfect!

  • DMHGF
    DMHGF Member Posts: 8
    edited October 2019
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    1st a/c treatment this morning. Port hurt like the dickens (less than 24 hours old) but treatment was smooth. Rested a bit today and feeling ok. I don't want to take any anti-nausea meds unless I have to...so I'm holding off until the queasiness gets a little worse so it will work overnight when I need to sleep.

    A little more worried about tomorrow. Fingers crossed!! Hope everyone is feeling strong!!

  • Lschaack
    Lschaack Member Posts: 6
    edited October 2019
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    Today marks 1 week from my first Taxotere/Carboplatin infusion. I need to vent - I feel horrible. I am extremely weak.I have had bad headaches and bad ear aches for about 4 days. I was extremely constipated but have now switched over to diarrhea (and it smells so horrible). My mouth feels like it is covered by a goo that is going into my stomach and making me nauseous (for the first time).

    I have been taking Extra strength Tylenol for the headaches and Sudafed for the ear aches. Took some at 3am and still woke up at 7 with headache. Had two episodes of diarrhea this morning (is it crazy to think that will be it?) The gunk coming out of my mouth / off my tongue is obviously swallowed and now upsetting my stomach.

    This isn't my first time with Taxotere - I had it 15 years ago and don't remember any of this - what I remember is peeling and extreme tender hands and feet and nails separating from the bed and mouth sores - but none of this other crap.

    Will text clinic about my side effects.

    Thanks for letting me rant.

  • RadQueen
    RadQueen Member Posts: 310
    edited October 2019
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    Hi warriors, just a quick check in. Day 12 post 1st AC chemo. So far so good no nausea or any problems. Hair hasen't even started to fall yet. Had two rounds of blood work WBC and RBC only went down by ,1, Med Onc. pleased as punch. but this last week my lukocites took a big hit down by over 50%. Was cleared by the Surgical Oncologist and Plastics guy to start back at the gym, but with luk. being low don't want to chance catching something so back to long walks. I miss water aerobics :( Had a PET scan just to make sure nothing was lurking anywhere and was all clear.

    Have 9 days till treatment #2 hoping it will go as well as the first. MO said that if you start strong you have a better chance of finishing strong lets pray that holds true for me.

    Keeping every one in my prayers.


  • RadQueen
    RadQueen Member Posts: 310
    edited October 2019
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    DMHGF don't be afraid to take the anti nausea meds, as long as you don't have to drive or anything. I had no nausea with my 1st treatment but still took the meds every 6hr for the first 2 days just to be on the safe side. I believe it's easier to control something before it starts than try to get a grip on it after , I also drank a lot like a whole lot of water at least 8oz. every hour. Some times I switched up with power aide. My hubbie was great with this coming to me with the little 8oz bottles of water. If you get a bigger bottle it seems like too much but the little small ones seem like nothing so you can down it with no problems and they stay cold the whole time. Then he just filled the empty ones with power aide and keep in fridge, and if 8oz seem like too much just get the small dixie bathroom cups about 3 to 4 oz. and double down. 3oz is just like a shot, so close your eyes and pretend.

    The day of chemo I drank about 2Lt. of water over 6 hr before my infusion . Did what my nurse said went home took my nausea meds and went to bed. Hubbie would come check on me every hour with water or power aide. Even ate a light dinner at 7:30pm. By 10pm my urine was clear no more red from the Adr. chemo. Like I said earlier don't know if all the water helped but it sure did't hurt. Gearing up to do it all again on the 21.

    Stay strong you got this...

  • RadQueen
    RadQueen Member Posts: 310
    edited October 2019
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    KitKat you are the bomb. Hope all goes well with your walk.


  • cyathea
    cyathea Member Posts: 330
    edited October 2019
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    Hi Karen,

    I knew from the beginning that I wanted a port. My veins are deep and small, and I didn’t want bruises to show at work. My MO said that the nursing staff where I get chemo is really great at getting veins (and they are), but for me the port is easier and less painful because I like to work on my computer during chemo and when they put the IV in my hand or arm, it hurts when I type.

    I had a port installed last month. I chose not to be put to sleep and it worked out well for me. I didn’t have pain during the procedure and my doc was great about telling me what he was doing/what to expect. There was a short period of time when there was some pulling and pressure. Although it wasn’t painful, I found it to be uncomfortable and I was glad when he said he was done with that part.

    I am the type of person that avoids Novacaine at the dentist when possible. I seem to have a high tolerance for pain. I also tend to be calm and collected. Because of these characteristics, not having general anesthesia was the best choice for me.

    I was done and back to work on my computer in the afternoon. (I am lucky to have the option to work from home.) It was “no big deal” and I didn’t have much pain. The worst part of recovery was not being able to sleep on my stomach

    I asked the nurse before the procedure how many women chose to have the general anesthesia. She thought it was about 50/50, so you’ll find good reasons for either decision.

    I wish you the best experience for your installation. I hope you have wonderful hospital staff and an excellent surgeon.


  • cyathea
    cyathea Member Posts: 330
    edited October 2019
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    RadQueen you rock! I’m impressed with your liquid strategy. I’m not very good about drinking that much. You encouraged me to do better! Thanks

  • cyathea
    cyathea Member Posts: 330
    edited October 2019
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    So sorry, Lschaack. I had 2 rounds of Taxotere. I didn’t have too much nausea due to the dexamethisone that they gave me pre-treatment, but I had a huge problem with diarrhea—two weeks straight! I started out taking Imodium, but that only helped to slow things down. I still needed to be very close to a bathroom.

    The mistake I made was not calling the nurse soon enough. I found out that I could take 2 pills at a time and that I could exceed the dosage on the box. Check with your nurse/onc about your situation. Eventually, they gave me Lomotil and that was better than Imodium.

    I also had mouth and taste issues and blood in my nose due to dryness. My DH found Arm & Hammer Simply Saline Nasal Mist at Costco. I would spray my mouth and nose several times a day and that really helped.

    I had muscle and bone pain that I thought was from taking Neulasta, but now that I’m on Abraxane and having the same issue, I wonder if that was from the Taxotere. The good news for me is that the worst days are the weekend (I get chemo on Thursdays) and Tylenol helped. So take heart, I hope you feel better soon

  • michelle94904
    michelle94904 Member Posts: 13
    edited October 2019
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    @Cyathea so grateful you mentioned the blood in your nose! I didn't even think about asking if anyone else had constant bloody nose/blood nugget buggers. (sorry TMI). Just bought Ayr Saline Nasal Gel with the pharmacist's help, and she suggested CeraVe healing ointment for the dry skin rash developing under my nose from all the nose blowing (& should be great for dry hands too.)

    Anyone have any sure-fire solutions to your chemo hotlips if you have 'em? I treated myself to a new Mac Moisturizing Lipstick with Argan Oil yesterday, since I haven't found anything that works perfectly yet to help moisturize my hot/dry lips (different than chapped, just chemolips I guess) - LOL figured that was good justification for new lipstick. It's a pretty color, but I still have dry lips. Also got fitted at Nordstrom for 2 new bras - no underwire no thank you - I'm a 1/2 cup smaller after my lumpectomy/breast reduction I learned, woot woot.

    Day 12 post-TC here too, woke up so dizzy I almost fell when I stood upright getting out of bed, definitely feeling the shortness of breath today too. Did errands this am, taking it easy the rest of the day. Looking forward to feeling semi-human, I hear/hope, next week before second round of chemo on 10/22.

    So grateful to be able to share TMI here with you all. Enjoy your weekend as much as you can. Sending healing vibes from NorCal.

  • Lschaack
    Lschaack Member Posts: 6
    edited October 2019
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    Just to update - I started feeling much better on Friday. The return to the human race continued today. I am eating better and gaining a few of my lost pounds back. I think what caused me the most problem is that the feeling bad part was later to occur than 15 yrs ago. Proves that you really need to take this 1 day at a time.

  • RadQueen
    RadQueen Member Posts: 310
    edited October 2019
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    Cyathea, I'm not very good about drinking either but told my hubbie it would be good for me and he was on me the first 4 days like crazy. I told him Okay its day 5 we can start to lay off a little. But still if he passes the fridge he will grab a little water bottle drop it in my lap and ask when was the last time I drank 8oz.. Have 7 days till treatment #2 will try the water stratagy again and hope it workes out as well. will let you know.

  • Kerid1
    Kerid1 Member Posts: 3
    edited October 2019
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    Hi all, my name is Keri (49) and I live in NE FL, if we have any other Floridians here. I was diagnosed on August 15 with Stage II Invasive Ductal Carcinoma. I had my lumpectomy on October 1 and one sentinel lymph node had cancer cells but all other lymph nodes were clear.

    I started Taxotere Cytoxan on October 10. So far so good with the normal expected side effects but nothing I haven’t been able to manage. I’ll be doing 6 cycles of it unless my MO can be convinced otherwise.

    I’m also getting Nuelasta, which is where the brunt of my problems seem to be. Claritin doesn’t seem to be working for the bone pain. Has anyone tried medical marijuana (where legal) to treat the bone pain? Did it help?

    Finally, and my apologies with TMI, but has anyone had their period during chemo? I just got mine but I saw something in the countless information provided by Mayo that I shouldn’t be using Tampons? Anyone have any awareness to the correct protocol?

    Thanks so much in advance, I’m glad this group is here.

  • missmom79
    missmom79 Member Posts: 90
    edited October 2019
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    hi sondra jusT now getting this. I tolerated chemo very well on the 9th of October. They did give me 1mg Ativan in my IV. I had adriamycin and another one that starts with a c. The first one that starts with a c started to make my eyes water. After like a half hour it went away. I literally crashed when I got home. My daughter called my name 3 times before I even heard her. I think it must have been the Ativa, my prescribed clonopin and just the stress and nervousness of my first chemo really got my whole body tired. I have had barely any symtoms. On day 2 the day after chemo I did wake up with rosey cheeks and my temp was 99.3. Had me a bit worried. I had barely any nausea, no diarrhea and no constipation. I’ve been up and about moving around and even got the nulesta shot 27 hours after to bring my white blood cell count up and everyone says it causes extrem bone pain but I have had NONE! So maybe I’m blessed? Tonight my temp is 99.2 and noticed my cheeks are red again. But I’ve been keeping an eye on it. And then on top of that I started my period today. It’s a few days late. Probably from the chemo. Have bad cramps.

  • missmom79
    missmom79 Member Posts: 90
    edited October 2019
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    Kerri that is strange how I just now read your post. I also started my period after chemo. Hmmm. I don’t use tampons but I wouldn’t risk it cuz our body is more prone to infection and that’s something that goes inside your body and can collect bacteria ect so in my opinion wouldn’t chance it. When did yiu have yiur nulesta shot?I had mine the 10th and haven’t had any bone pain?

  • kaaadams
    kaaadams Member Posts: 33
    edited October 2019
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    Hi ladies! I start Taxotere 10/22/19. 4 cycles every 3 weeks. Anybody else out there prescribed this? Most I see are doing AC or other chemotherapeutic drugs also.

    Thanks!

  • sarahsmilesatme
    sarahsmilesatme Member Posts: 53
    edited October 2019
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    Good Morning Ladies....thought I would share my post-chemo experiences as well. Thanks to everyone for their guidance and advice.

    Kaaadams & others: I’m on 4 cycles of Taxotere & Cytoxan. (Admittedly, I am curious why some folks have 6 cycles total vs 4...). My first cycle was October 2nd. Blessedly, I had no immediate reactions during the infusion. My infusion day was truly a non-event. I didn’t follow any specific eating or drinking regimen prior to, but did drink 2000 ml of water the day of, and several days after. I’m also cold-capping and I tolerated that well. My biggest issue with the cold-cap was NOT the cold, but the weight of the cap. I tried (unsuccessfully) to wear the NaturaCure. With a bit more resolve, I’ll be trying those cold footies again.

    Post chemo, I didn’t have any nausea or diarrhea but did develop a consistent fever (always above 101) on the 3rd day (lasting 3 days - Saturday, Sunday, Monday). I did go to the ER, cause I didn’t want to risk any chance of infection, and after bloodwork, a chest X-ray, and a urinalysis, I was released. Doc’s indicated fever may have been a reaction to one of the many meds. I’m glad I went and would do it again!

    I was also really constipated - for 8 days! I’ll be getting in front of this with some laxatives (thinking Senokot-S) prior to beginning my next infusion.

    My only other weird side effect was for the first 2 days post treatment, my resting heart rate was lower than my normal. It usually averages around 70 bpm; but for 48 hours, it was averaging below 60 bpm’s (frequently in the 50’s). Docs weren’t concerned as I had no other symptoms.

    I also felt like I had a bad flu bug (without the nausea and diarrhea) for several days; but I would say I was less than 100% for only about one week total. I’ve taken a couple of naps here and there since, but my life was pretty much back to normal after 8-9 days.

    Thanks ladies!!

  • Kerid1
    Kerid1 Member Posts: 3
    edited October 2019
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    Missmom79: It is strange, mine came about four days early along with cramping. I’ve called my doctor on the tampon question. Lol. I had my first treatment on Wednesday the 9th with Nuelasta given on the 10th. By Friday at 5:30 I had significant bone pain.


    SarahSmiles: I have the same question on the 4 versus 6 rounds of TC and will be asking my MO at my next appointment. I want to do whatever I need to so that I don’t have to go through this again but at the same time, two less rounds of TC sounds glorious to me