Chemo starting March 2019
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Oh, no, Kamboka, I'm so sorry! I hope it clears quickly and the rest of your treatments are tolerable and successful.
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Margun, the recovery will be longer. I really just want to be done. I miss my pre cancer life.
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Dawn, I have the lumpectomy option and actually that is advised to me by my surgeon but I am thinking mastectomy will be safer for long term. You are not in that opinion? I am really torn between these choices
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Margun, I completely understand wanting a mestectomy. Even though they say reoccurrence rates are similar for a lumpectomy compared to a mestectomy, I get it. My sister in law keeps telling me I won't worry as much if I have a mestectomy. I've never had surgery other than my port placement. The idea of staying even 1 night in the hospital and then going home with drains attached just freaks me out. My husband has been incredible through this but the look of helplessness on his face makes me crazy.
Maybe I'm still in denial. Maybe I just can't accept that this is happening. I don't know. I'll do what the "experts" tell me. I sure as hell am no expert here.
Please don't base your decision on anyone else. You have to do what you feel in your heart is best. A mestectomy may bring you peace of mind and after reading these boards, that would be welcome ♥️
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I did a lumpectomy. I had the opposite feeling and wanted to keep my breast and my sensations. Since stats were identical, I did a lumpectomy and am glad I did. In some cases the outcomes are the same, and when it's a personal decision they let the women make it.
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Dawn,
I understand you being upset. I think I have a similar tumor, close to the skin, I think I’m looking at the same situation. right now, I just focus on getting done, whatever that will mean! Hugs sent.
Lauren
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Thank you Lauren. I guess I wish my BS had given me the worse case scenario for this instead of telling me at first a lumpectomy and then on our last visit, a nipple sparring mastectomy because yesterday and today were both complete letdowns. Yesterday the plastic surgeon said I wouldn't need radiation after a mastectomy. Today I saw my oncologist and he said I will require radiation because of lympnoid involvement.
I'm just disheartened because it's now a mastectomy with nipple reconstruction and 5 weeks of radiation.
It's just not what I expected. I accept it, but I don't like it.
Cancer sucks
🤗
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I can completely relate to above. I thought or was told by my bs that I would not or most likely would not need chemo if I went with double mastectomy, yet after surgery after meeting with MO and that she was recommending chemo, I was devastated but here I am more than half way though chemo.... and surviving.
Cancer does indeed suck …
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DawnS1962
Yes, it all sucks! I like answers too. I like to plan, think about recovery time, get on with my life! This does not to be something we can do and the loss of control is one of the hardest things to accept . I had an absolute toddler meltdown at the infusion center today over a similar issue ( loss of control, change in plans....ugh). This is such a difficult process to deal with, I just hate it all! Guess we both have to keep the faith and get this mess over with!
From what I can tell, we are about the same age as are our kids...maybe that's our problem, Ha!
Lauren
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Lauren, I am a planner. I'm already planning a huge party for when my port comes out which won't be till May 2020.
If BS said this is what could happen depending on how you respond to chemo, I'd be good. Don't tell me I'm going to get a lumpectomy or a nipple sparring mastectomy if you don't know. That's what's frustratin
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Hi everyone,
Just checking in on how everyone is doing... I am down to only 2 more DD taxol and should be done with chemo by June 21st!!! I am finding taxol more bearable than AC and finally seeing a small light at the end of the chemo tunnel... but also having a hard time with people telling me it is almost “over”, like it seems they all want to be done with this... I still have an exchange surgery to plan for the Fall and then years of hormone therapy to bear with so I wouldn’t say any of this will be “over” in June but hoping to try to enjoy the summer (first I need to pack and send my son to sleep away camps!) and hopefully get some hair growing back ASAP since I am way done with the bald look!!!! Can’t believe it is practically June... Sending good vibes to all!!0 -
Solobroker & DawnS when I met with the surgeon she told me she would do lumpectomy surgery first then we would do chemo. So I got all set up with a surgery appointment and mentally ready to go. Then 5 minutes later the oncologist came in, and reversed the entire plan! Chemo first then surgery. So is sounds to me like each specilist in this field has their own take. The surgeon did say she would defer to what ever the oncologist recommended.
Had my last TC chemo yesterday, the 29th. Can't wait for the SE to go bye bye. Mine were mildish but pesky.
LizzieAG yes I agree it is never really over. After chemo and surgery and radiation there will always be special pills and scans that we will have to hold our breath over praying they come out clean.
Sending my best to all involved with this challenge!
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Gratefulgrandma, I wish my BS had given me the worse case scenario instead of telling me a lumpectomy. I do better with that. The only tears I've shed through this process so far were of relief when my scans came back clean and when my tumor shrunk. To be fair to my BS, he didn't know me. He's been very compassionate and I trust him. I'm just the kind of person who does better mentally expecting the worse and being relieved when it's better than expected news.
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DawnS I totally get what you mean, it is better to hear worst, then if they change their mind, for something less worse, you get to feel better about it. I guess when I went in, with a 7 cm aggressive tumor I had resigned myself to full masectomy and then heard the latest protocol is "breast perservation" I went into shock in a good way. And then to hear I could get the cut done first I was really happy. But all that flipped, and so now I gutted the chemo out, and off I go to surgery. I am thrilled at all the advances that have been made for BC, but still mystified of all the different treatments out there. My best to you!
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HI All,
Just checking in. I got to RING the bell on May 16!! - What a feeling. I of course did not want to deal with my SE's following ringing the bell....it's really hard not to feel normal. I am looking forward to getting my port out on June 21! - I was planning on scheduling my second part of my reconstruction surgery for July - but instead, my husband and I are going on a cruise to celebrate that chemo is over!!!! But then I had to remind him that he will be going to the beach with a bald headed woman!! He just laughed and said - "That's OK"! He really does not seem to mind my temp new look! I know that I will have to reamin in the shade for the most part - but I just want a week with NO doctor appointments!!
I have developed GERD!! - I'm currently on Nexium for that but the pain is pretty bad. I am hoping this is all chemo related and will go away soon. I still have difficulty drinking water!! How can water cause pain?? Hopefully the fatigue will diminish as well!
Dawn - I do understand how you feel about not knowing all the details. I was told I just needed mastectomy followed by oral meds for 1-5 years. But then my onco score came back and it indicated that I had to have one round of chemo. It is what it is.... We adjust - we are strong - we are warriors!! I also understand about the drains - they are not fun. I came home with three. I never thought my husband could take care of me, but he was incredible! He emptied my drains and changed my dressings. (He was never able to handle anything medical with my kids or me before!).
Thinking of all of you and praying for you often.
Looking forward to next week since it will be three weeks post infusion and I should feel better.
Hugs to all!!! - We are WARRIORS!!! - Sheila
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Hi, girls!
My mom finished AC and in now on Taxol #4. She hasn’t really experienced any side effects other than hair loss, fatigue and fluctuating appetite. Should i be concered her chemo isn’t working? Is there a correlation between effectiveness of chemo and SEs
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ucfknights,
No. I have had all the same thoughts because my SEs have not been bad. The nurses tell me that not getting sick is not an indication of effectiveness. She is just lucky not to be sick. perhaps we are just so conditioned that we are supposed to be sick. When I started chemo, my Dr. Told me that there were really good drugs to help us these days
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Well, I rang the dang bell on May 29th and ended part two of this journey. This round of chemo has been so different though, I haven’t really had many probs other than the pain and fatigue, but things are dragging out this time. If I eat I feel like it’s gong to explode out of me , but I’m hungry?? Nothing at all has a taste and that is new. Still no nausea or vomiting, just food makes me feel like crap no matter what I eat. My anemia is worse but MO says hopefully it will reverse. It’s bad enough though that my heart pounds and I gasp for air. My mouth isn’t sore but it feels disgusting. My incision from lumpectomy 2/7 still leaks occasionally. I feel like Pac-Man is eating the rest of my boob from the inside. The pain this time was later coming ,lasted longer and was even worse. Saw MO yesterday and wbcs were only at 6 instead of the 20 they have been. Not fair that pain bad enough to make me want to jump into the new “Arkansas Ocean” only raised it that much!
Now I’m worried about going back to work on the 21st. I mean I can barely stand up 30 minutes, much less 10-12 hours on a concrete floor . Did I mention there is usually 4 miles of steps involved daily too? I wasn’t allowed to work because I’m a retail pharmacist, for Wal-Mart At that, and too many germs this time of year. Not to mention that the fatigue started last Oct and was already all I could handle when I was diagnosed. I have had 5 open abdominal surgeries and never been afraid of going back to work. It was always hard getting back in the swing, but now I am scared. As soon as the rain stops, I’m gonna walk in the pool and Do water aerobics. By the time it got too cold early Oct, I was running AT LEAST 2 w hours and doing an hour of aerobics or laps. I had lost 50 pounds. Now when the fatigue started I could do nothing and with the steroids I’ve gained back several pounds. I just don’t know how to condition myself to get back to where I can run all day on my feet. Any suggestions? I have on my good weeks walked some around Walmart but then I collapse. I mean I have never been this exhausted in my life! And the brain fog too... just pray I can get it together by then! Retail patients are not very patient or kind oftentimes,
Guess it’s on to radiationin a few weeks ... that has got to be better!!!
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Hi all! Hope you’re all doing ok. I think a lot of you have already finished so hope you’re recovering well.
Just wanted to let you all know that I’m officially half way through chemo now having finished 4 rounds of FEC100. It was tough, I got pretty much every side effect known to mankind, and the nausea and reflux was horrendous, but I’m done with it now and moving on to 4 rounds of Docetaxel (Taxotere). Everyone tells me that this will be easier (God I really hope so). With FEC I was basically bedridden for the first week with vomiting and nausea which we never found the right drug combo for, and extreme fatigue for the second week. Third week was recovery and was hit and miss. I am so glad I took sick leave as there is no way in hell that I could have worked through this. The last 2 rounds I got really horrible GERD and haven’t managed to eat more than a few crackers and some oatmeal. They had me on Nexium but by round 3 it was making me feel faint and nauseous after eating and giving me terrible headaches. Was changed to Metoclopramide and Lansoprazole which seem to be working better for now
So, bit nervous about starting Docetaxel as I’m stepping into the unknown again and will have to learn the ropes, but never want to see the red devil again. Actually made me feel violently ill just looking at it.
Any advice on getting through Docetaxel? I have 4 rounds starting Wednesday.
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Ghcpd: Congratulations on ringing that bell! Chemo is tough, it wreaks havoc on our bodies, but now you're finished! Praying you gain some strength back soon.
Pokyspider: I'm on Taxotere, but also on Carboplatin (and H & P), so it's hard to know what SE come from what. I've heard stories about the red devil, so I'd have to think Taxotere would be better tolerated. I pray you tolerate it well.
My 6th and FINAL chemo is on June 26.... I'm so excited! I'm over all this chemo, I'm tired of being tired & tired of feeling blah. I'm so ready to be done. I'll continue H & P for a full year but that's doable. Surgery will be a month after last chemo, so maybe I'll feel kinda good & refreshed in time for that.
Praying for everyone, we'll get through this.
Angie
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Pokyspider: I wish you the best with Taxotere on Wednesday. I'm sharing my story but remember that everyone reacts differently to these drugs.
I finished AC and started Taxotere in mid May. I chose Taxotere over Taxol as it was supposed to have fewer neuro side effects and I had previous neuropathy. I did the icing of hands and feet during the infusion. I also had started on Vit B complex a month or so before. The next day after infusion, I noticed redness in my hands. Within 24 hours of infusion, I had developed hand/foot syndrome. My hands and feet felt like I had burned them and were red. My joints stiffened and were swollen. I had crazy numbness of fingertips. My Oncology office said that Taxotere did not cause hand/foot and would not respond to my request for medications. I ended up in the ER three days after infusion. They gave me steroids, lidocaine gel and pain meds. I had to constantly ice them for any comfort. For a day or so I almost couldn't walk from the foot pain. Five days after the ER visit, I had to go back to the ER with a fever. I stayed in the hospital for 12 days with neutropenic fever, pneumonia, pulmonary edema and asthma like breathing problems. I made the decision, even before the hospitalization, that I was not taking any more taxane drugs and ending chemo early. I'm at peace with that decision. Five weeks from the Taxotere infusion, my hands and feet are still peeling. This causes some tender spots and looks ratty. My elbows also turned black and then peeled. What worries me is that I might have some nerve damage internally (having problems with elevated heart rate). Am seeing a cardiologist this week.
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Hey, everyone. Just checking in. I am about a month PFC. still have lingering fatigue. But that is my largest complaint. The neuropathy is getting better. It is still there, but I can feel that it is going away. Not much hair growth. I went to a wedding this past weekend and tried to put on mascara. That was when I realized I have about 5 eyelashes. Oh well. Hopefully they will come back.
I have had the Zoladex shot. I have that monthly for at least a year. No SEs to report beyond menopause stuff. But a warning. That shot is in the stomach. And the needle is kinda big. They had me ice my fat for a good 10 minutes before getting it.
I start the Letrozole this weekend. I take that daily for 7.5 years. It is supposed to have less SEs than tamoxifen.
Surgery is scheduled for August 19 to take out the tissue expanders. I won’t miss them! I could have done it earlier, but I wanted to have a summer. You can’t go in a pool or ocean for 6 weeks after surgery.
I hope everyone is well. I think the TC ladies are done and the AC +T are at least through the red devil. Please let us know how things are going!
Jean
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Hi all!
Thank you Adhoney and Kamboka for the Taxotere advice and support. Kamboka, that sounds horrendous. 😰 So sorry you’ve had such a tough time but it’s good to know. Much appreciated. Fallschurchgirl - had to laugh about the eyelashes! My remaining ones jumped ship a couple of weeks ago when I ended up with 5 styes in the one eye. Doc said to wear sunglasses when you go out and have no eyelashes to help avoid dust and pollen getting into your eyes. I hope your surgery all goes well - good idea to postpone a bit and enjoy the summer.
Had my first infusion yesterday morning... I had trouble again. Fasted the day before and day of chemo but I started feeling a bit queasy when I arrived at the chemo suite. I'm almost 99% sure it's psychological as I was feeling really anxious and my blood pressure was very high going in. Had the usual problems finding a vein as they are extremely reluctant to do a portocath for some reason. Said they would rather not do anymore surgical procedures during chemo. I have a few blown veins from FEC and can only use 1 arm due to lymph node removal in the other so I’m really stressed about the while thing. Never had a problem with blood draws or needles in the past. 😰 Unfortunately I was stuck really painfully on my inside forearm which made me burst into tears due to the stress of everything. Poor nurse was mortified. She managed to finally get the line in after a bit of jiggling and began the infusion, but I started throwing up shortly after and continued for the entire 2 hrs. Had nurses handing me sick bags, rubbing my back and fanning me throughout while I tried to hold back the tears. They were all so very kind which made me feel even worse for causing trouble. Chemo nurse called my doctor to come up and he gave have me some anti-nausea medication in a jelly and sent me home with 6 days supply and on strict orders to come back on if I didn’t improve within 24 hours. He said it's unusual to have nausea with Taxotere but I’m 99% sure it was anxiety. In the past, usually 3 hours after FEC I was vomiting as a side effect for at 24-72 hours straight so if I can just control the anxiety it will be so much better.
I also don’t need a Neulasta injection a couple of days after Docetaxel which I’m really happy about. My bruised arm and wallet are even more happy!
A friend rescued me from the hospital and drove me home, although I threw up the jelly while I was waiting for her in the lobby. 😰 I'm feeling much better now that I'm home and can relax. No nausea at all since getting home and I had some oatmeal and banana for breakfast just now which seems to be fine. Maybe they could hypnotized me next time! 😅
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ugh. Pokey. I am so sorry. You really seem to have the worst of our chosen poison. I hope that your SEs remain low for the next few days
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Pokyspider,
Sorry you had a rough infusion. Sounds like the nursing team is very caring and competent. I hope the next infusion goes better. Perhaps you can ask your doctor for an anti-anxiety med to take before you arrive. My doctor gave me one as a pre-med before all my infusions. I, too, dreaded going to the infusion center. Just the thoughts of going and thinking about the colors in the center would make me anxious. I had to stop eating foods while there as I associated the food with infusion and would get nauseaous thinking about that food.
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pokyspider: I’m so sorry to hear that things didn’t go very well for your Taxotere. I agree with Kamboka about asking for something for anxiety prior to chemo, that should really help. Also, could you play some relaxing music to listen to while you’re there? That should help you relax as well. Praying the next few days are better for you. Sending hugs your way...
Angie
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Thanks ladies, I'm feeling a lot better now. I'm 100% sure it's a pavlovian response as my brain has learned to equal chemo to vomiting with FEC over the last 3 months. Since I got home I've been a bit tired but nowhere near how I usually feel. I know it's only been a couple of days but so far Taxotere has been fine. There's been no nausea since I got home and I feel a lot more hopeful and positive today. I even brought my dog for a walk yesterday.
I do usually listen to music but the stress just got the better of me as soon as I stepped foot inside of the chemo lounge. I'll talk to my doctor about anti-anxiety meds before the next infusion in 3 weeks time.
Thank you and hugs to you all.
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hi everyone,
Congrats to those who have gotten to the end of chemo, and good luck to those still powering through! I had my last taxol just over a week ago Friday, so glad it is done and now the side effects too seem to be mostly done! It was an emotional week ending... feels kind of scary but now that I’m feeling better I’m happier and looking forward to the summer! Jean - I have my first zolodex and zofran (AI and for bones) July 22, will then be monthly for a long while, and the zofran every 6 months. Hoping that part is mostly manageable! I’m also waiting to swap my expanders until after Labor Day, I want to swim and have some normalcy for the summer! This means I have my port all summer but I can handle that. I would very much like my hair to grow back ASAP, like enough already!!!!!! Hope everyone is feeling well!
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Well, things went downhill over the weekend. On Saturday I had aches and pains all over and felt like I'd been hit by a freight train. My fingernails started to feel bruised like they had been trapped in a door. Monday I got a lovely dose of oral thrush and yesterday temp hit the magic 37.5C so off to the hospital to get checked out. Turns out my white blood cell count had crashed and I've been admitted for a few days. Took them 7 attempts to find a vein using ultrasound to get an iv in. Have been given antibiotic iv and a white cell booster injection. At least I know it shouldn't feel this bad. Was starting to get worried. Resting up and will be fine in a few days
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so sorry, Poky. Hope you feel better and that the white count goes up.
Jean
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