Starting Chemo July 2019
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Good afternoon, I hope today is a good day for yall! Had my 3rd Taxol yesterday with 1 more to go. He reduced it by 20% and didn’t do neulasta so maybe that will help.
Does anybody know when they remove the port? Haven’t thought of that till now.
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so I just had my fifth of six TCHP today. Major symptoms have been fatigue and diarrhea. Diarrhea is under control if I take Immodium prior to the start of symptoms. My issue today is that for the past two months, I have noticed a tender spot on my side boob area. I had a bilateral mastectomy in June. I finally said something today bc hoping it would go away on its own wasn’t working. Oncologist was perplexed. He said it doesn’t feel like cancer bc it feels like a ridge. Original dr told me the original lump didn’t feel like cancer, then I was told there was likely no lymph involvement and there was... I’m freaking out a bit, trying to stay positive but after being reassured by drs about many things in the past (including for my special needs sons) and then having the opposite be true, I’m really worried. scheduled an ultrasound for tomorrow.
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Dianne that’s great! You finished chemo!!!! 🤗🤗🤗
jjpope1 I was told they will remove port whenever a patient wants. The ideal time would be after getting the all clear that treatment worked and they’re not seeing any more cancer. I’ve had a problem with mine since day one and can hardly wait to have it removed. For those who barely notice it’s even there, they sometimes keep it in for years and just have it flushed every 4 weeks or so.
Rubydream only one more to go! That’s fantastic! 😊 I understand not trusting the doctors but I’m glad you spoke up. Wishing you best results with your ultrasound tomorrow. 💕
So I think today was my fifth Taxol treatment??? I don’t know and I’m not getting up to look lol. Started Having nose bleeds and continued stomach pain so they scheduled a CT scan for my belly tomorrow morning. Today I had second iron infusion for low red cell count and fatigue. Nurse said it takes two or three to start noticing the difference. Overall I’m managing the side effects pretty well. I’ve told everyone I have 10 total Taxol infusions but my paperwork says 12 🙁 oh well. Wishing everyone minimal SEs and hope y’all have a great weekend!
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Jpope hope you feel better this time! Had my 3rd Taxol today. Still have stupid dry cough- but no congestion, no fever, and the mucus is clear so it's just the remnants of my cold. I have one big toe with darkening. - it's like black if it continues I'll lose my nail. And I bumped into a plastic storage bin and boy it smarted and my whole nail on the other foot is like purple. Protect your toes peeps! I am trying to wear socks now and be more careful.
Rubydream- I have really really bad scanxiety. I feel for you right now. During chemo I have found that my lymph nodes will swell for a day or two and that is my own weird side effect, could that be the case for you? Also could be a ton of stuff that is not cancer so all my fingers and toes - even the bad toes are crossed for good and FAST results. They better give you some piece of mind like ON THE SPOT! waiting is the worst!!!!!- I can't stress that enough- the worst!
Melmax you are really running thru the wringer. So are you drinking the nasty prep stuff today? That totally sucks. I am sure you are going to be fine- and hoping the CT is easy and also that you get results fast!
Big gentle hugs to all.
I'm glad it is has cooled off in Chicagoland- def. easier to tolerate chemo when it's not 90 and also easier to wear a wig to work. A wig is a hair hat. No one wants to wear a hair hat when it's 90.
:-)
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Melmax - Ah yes, the perpetually bloody, running nose. That started about week three for me and I still have it, a week after my last Taxol. Truly annoying. I also had diarrhea and pretty severe stomach pain, so the MO decided that I needed an endoscopy and the gastroenterologist figured she might as well do a colonoscopy while they were at it. Both came back normal, but I empathize with having to put up with one more worry added to the chemo. My best wishes that it goes just fine!
Good luck to everyone as you finish your treatment - this finish line is in sight!0 -
Aargh, MO decided to continue my Taxol, along with the Herceptin and Perjeta, until my surgery in November. I didn’t find out until I showed up for HP infusion today. And here I thought it was safe to go out in the sun again!
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That Sucks!!!! big hugs Diane!
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ditto what Diane said!
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My experience with my MO has been less than stellar, but I don’t know how common my experience is. I’ve met with a total of three times, once before we started chemo, where I was told what they were going to do (not asked), And two other drop in appointments while I was getting my infusions. Other than that I’ve had very little contact or communication with her. That has resulted in this morning’s mess, where first I was told I was getting Taxol only, then a page to the MO, now getting HP only, then another discussion, all three drugs and this would be my last Taxol. However, my next HP is in 10 days, not three weeks, and I will have another TWO days before surgery.
Have any others had similar experiences?
Di
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I meet with my oncologists- the doctor or a PA, before every infusion appt. At the very first appt before anything started, I told them I wanted a mastectomy and no chemo - they said no due to my age 52 and they wanted to conserve the breast. They also said I wasn't a candidate for reconstruction. When I told them I didn't care about reconstruction they wouldn't listen. I wasn't given ANY other options - they said chemo, more testing, surgery, radiation, and then pills, in that order. I honestly think the plans they make are all about the money 💰😤 Yes I could have gone somewhere else but it would have been a two hour commute and with working full time, having a senior in high school, and my dad having terminal lung cancer, I just couldn't do it. Do you have the option of switching doctors I feel ya dvhmouse!
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My experience was different.
My lumpectomy was scheduled before I even met my surgical oncologist. When I did meet her (5 days before the surgery), she explained why the lumpectomy was the preferred option. I was so blindsided by the cancer diagnosis that I didn't question anything.
I met with my medical oncologist prior to each chemo infusion. We discussed side effects from the previous infusion and decisions were made about the following infusion. I'm seeing her next week to discuss next steps (Tamoxifen?).
Now that I know about my gene mutation, it means I skip radiation but am having a double mastectomy without reconstruction in January. Information that would have changed the original lumpectomy surgery.
That said, regardless of which surgery (lumpectomy vs mastectomy), I still would have needed chemo based on my oncotype.
I'm sorry your experience has been so discouraging.
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Met my MO b/4 any surgery. She said she thought I would likely need chemo. After surgery had second appt and she said while we wait for Oncotype it would be best to move on starting chemo - because I was so young (LOL I'm 48) and it was likely I would have a relatively high Oncotype. So I was bummed but I said OK. We set up appts for port, and CT, Bone Scan. a few days later she called to let me know Onco type was 31 so full steam ahead. I told her I wanted to work during chemo and she recommended a schedule that worked out very well. She called me with all my test results - which scared the crapola out of me at first. She reviews my # before I have my weekly infusion and she always stops by before my infusion to see how the week went, any side effects etc This last infusion I had to show my toes. - one is discolored. So I feel like she is very good and listens to me and isn't going to steer me wrong. Like I was bummed that I had to start Chemo on 7/24 I was hoping to get in a couple more weeks off- but then I realized 1. better to start and get it over with than prolong it- and research shows it's best to start chemo in less than 4 months from diagnosis- so then I was like I'm glad she was like let's get the show on the road.
My MO is at Little Company of Mary in Evergreen Park. (approx 95th St and Western Ave) I know it's probably a hike for you Diane, but just in case you want to look at switching my MO is Dr. Shamila Garg.
:-)
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Diane, Wait, you are having chemo 2 days before surgery? That can't be right!
-Victoria
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dvhmouse, that really sucks. I'm so sorry. The diagnosis is so overwhelming and the process exhausting that it is really difficult to switch drs in mid treatment. Whenever I see commercials for cancer treatment programs, I'm reminded that this is big business which is scary
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to those of you who finished congrats! Your posts reminds me that there is light at the end of this tunnel! I have two women in my neighborhood who went through this over a year ago and now it is the furthest thing from their minds-a blip in time!
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Victoria - yeah, I realized that yesterday and sent an email to the BS nurse to ask if that was going to be a problem. I haven’t heard back from her yet, but I did find out, after several times of back and forth, that Friday was my last Taxol. So anticlimactic as the day had been very confusing already. But I’m still concerned about 1) getting HP 10 days after having one, not the normal 21, which also confused the infusion nurse. She told me they never give HP more frequent than every three weeks. 2) having even the HP two days before major surgery.
Rubydream, Melmax and Fairydragonfly - thanks for the kind words! I’m trying to take each step, one at a time, and not look too far ahead. So far I’ve managed pretty well with that attitude and not gotten too depressed or overwhelmed. Yesterday, though threw me for a loop, just because I was going to get more Taxol. I pretty much spent the rest of the day in a funk.
My husband thinks my care so far has been subpar for a teaching hospital. Also, sometimes I don’t think to ask questions and be assertive enough. I have considered changing MO, but as I’m a third of the way through this ordeal, I’m somewhat loathe to start over again. I’ve already had to do it with my BS, as my original one was going on maternity leave when my surgery would be due. I met my current one halfway through chemo.
The other thing that I feel is weird is that they didn’t do a bone scan or CT before starting treatment. Even with a quite high alkphos value. Also, they aren’t planning to check another echocardiogram despite being on HP. I am at least going to have a breast MRI next week, so hopefully I’ll have an idea if the chemo has worked. If not then it’s surgery, no reconstruction probably, radiation and Kadcycla. I’ll be interested to see what the mastectomy pathology shows. My two previous biopsies were consistent, ER/PR negative, HER2 positive, grade 3. Even the DCIS, was ER/PR negative, high grade. I know that means I’ll not have cPR, but I will be happy if nothing has spread!
Thanks everyone for listening and being so supportive! It really does help.
Diane
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So treatment 3 of Taxol 20 % reduction still hell!! Went back to dr today dropped 14 lbs and got fluids. So need your wwud and input. MO gave 2 options last treatment, 1 was reduction and 2 was not do last 2 and quit. So I chose the reduction and still just help.
At this point I don’t even know if I have it in me to do 1 more. I’m so tired and so tired of this hell. Keep in mind all my cancer is gone, and only did treatments to prevent reoccurrence. I want to quit so bad but In my head I feel like a failure if I quit. What would you do?0 -
Jjpope- please don't quit. My chemo was also holy hell. But, the horrible se's it created I knew were only temporary. My chemo also was preventive due to my high onco score. When MO gave me a reduction for last 2 , it was more tolerable for me. Perhaps they can give you an alternative drug? Best of luck to you.
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You need to weigh the side effects versus potential benefits. Given that you're not trying to reduce a tumor prior to surgery and the fact that you've completed all but ONE treatment (AC-T, right?), I would never call you a quitter. You should discuss it with your oncologist to determine if proceeding with the last chemo is worth the risk. From what you've described it isn't that you can't handle the side effects and rather that it is causing severe adverse impacts to your health.
Regardless, YOU ARE NOT A QUITTER!
Editted to add: You also tried the reduced infusion. In looking through your past posts, AC was easier for you and you had gained some weight. I am concerned that you are losing so much weight now on Taxol. Discuss the pros and cons with your oncologist. In the end, you know your body best. Sending you lots of warm,healing vibes
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Jjpope1 - if you can see your way to doing one more infusion, I think you might surprise yourself!! I ended up having thirteen weeks of Taxol - one more than expected! Which floored me for a couple of days, but I did it. And I think you can too. You’ve been very brave through this journey that will come to an end, and you have lots of wonderful folks on the boards to support you. Either way, as Fairydragonfly said, you will never be considered a quitter, but a realist. Do what you can, and then stop. Be kind to yourself and make good medical decisions. Hopefully the lost weight will return, and you can move forward. Just keep moving forward... 😐😘
Rereading this sounds a bit hackneyed, apologies. Mostly, I just wanted to show support for your decision, whichever one you make.
Diane
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Jjpope I had zero margins after bilateral Mx and THCP has been rough. Given the option of reducing dosage, I thought about the possibility of recurrence and if it happened, would I always wonder if the recommended dosage would have prevented it. I felt like it's “easier" to fight it now than if it comes back. (Also got some special brownies and doing yoga and acupuncture) it's a difficult decision but don't make it when you are feeling your worst.
ETA I had written this much more eloquently but then it disappeared!
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I cannot wait to be done and have one more TCHP then HP for 11 tx (plus expander/implant surgery and radiation) I'm wondering if anyone else is continuing with just herceptin and perjeta to complete a year and if so, what have you heard about reduction of side effects when the carboplatin and taxotere is stopped.
Does anyone else feel letdown when learning that someone you know had breast cancer, only to learn they underwent ahad a lumpectomy and radiation....so not the same. They know it and are typically apologetic but
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JJpope, I feel your pain...it's a hard road and no one is going to judge you. You need to do what is right for you and your health. That said, I too have lost a ton of weight and have a tough time controlling my diarrhea for a week after my infusion. My MO prescribed Lomotil instead of Imodium and that has made a world of difference. I have 4 down and 2 more to go of TCHP...I can't wait for it to be over. JJpope, You are not a quitter!!!
Rubydream, I am going to start 12 rounds of HP on Dec. 5th, after my 6th TCHP. My MO has "promised" me that that the side effects will be much less and actually said I can have a HP infusion the day before surgery. I don't have a date for surgery yet but hoping the end of December. .I still have a double mastectomy, radiation and the HP infusions to go. Getting through the chemo part of this is my main goal right now.
Congrats to all that are on the other side!!! To say I'm not a bit jealous would be a complete lie!! :-)
Be strong!!
Julie
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So the results from my pre-surgery, post-neoadjuvant MRI, indicated some shrinkage of both masses in my left breast. Luckily no growth, nor anything in the right breast, yay! But after 13 weeks of chemo, I would really have hoped that the darn things would have have shrunk more than 4 mm! Is that unreasonable?
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hi this is all new to me but I need to share n have this platform to get thru this. I am 39 yrs old fighting breast cancer! I had a double mastectomy On July 10, 2019 with plastic reconstruction surgery with implants. I was diagnosed with invasive ductal carcinoma grade 2 and ductal carcinoma in Situ ... the tumor measured 4.3 centimeters and had traveled to a couple lymphnodes that needed to also be removed. I recovered for 8 weeks and then started a 16 week chemotherapy treatment starting with AC then taxol. I will be finished my chemotherapy on nov 18 n I will hv a 3 week break then I start radiation and I will receive radiation for 7 weeks Monday thru Friday every day. I have been having horrible side effects from the treatment n want it all to just end!
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dvhmouse- I'm not an expert but I saw a paper showing that MRIs aren't all that acccurate in giving sizes. I don't recall the exact numbers but about 40percent give values too big and about the same numer give too low. So your MRI may just be overestimating the size.
Amanda- so sorry that you have to go through this and have been having a rough time. Our teatment plans are similar. I have. AC next then surgery and rads. I understand how you are feeling!
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Hi Amanda710-
We want to welcome you to our community here at BCO! We're so sorry you find yourself here, but we hope this community can be a source of support for you. We know how difficult and overwhelming it can all be - just try to take it a day at a time!
The Mods
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JJpope. 1. whatever happens you are not a quitter. You have had 4 a/c plus 10 full Taxol and 1 reduced taxol. What are your stats as far as oncotype did you get that? I did some research ie read a legit study - if you are triple neg. Please please push thru to do that last Taxol. If you have a higher oncotype push thru to get the last one one. If not if you have ER /PR positive and no node involvment and the tumor is less than 1 cm - and you are over 50 and going to be taking tamox or AI it's less likely . The best treatment is 4 A/C followed by 12 Taxol. IF you finish with 4 A/C and 11 Taxol and don't have high onco score - high grade- larger than 1cm tumor node involvment or Triple negative - the different btwn 11 and 12 should not be very detrimental. 14 lbs in one week is def. not good.
dvhmouse- I too would be bummed to not have a larger reduction in tumor size. I completely get what you are saying. Reduction is good - def. After the surgery you will keep getting the Herp. for a year right? I think that one is the big difference maker. The results of using that to stop the HER2 is so amazing. I would still push for a CT and A bone scan-- insurance will cover and it does give important diagnostic info AND peace of mind to you so why not give you the orders and let you have the tests!
Hugs Amanda! Only 1 month and 8 days and you are done with chemo! Side Effect suck.
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I’m better since Weds into Thurs. I am going to talk to MO next Weds before treatment to see what his thoughts are. The reduction took a slight bit of pain away but made it last longer. The crazy part of losing the weight my stomach still looks swollen like I’m pregnant 😩 I wouldn’t even have known I lost all that weight unless I got on the scales. Not sure if it’s fluid or what? I’m to the point that I look sick in the face and I hate that. I look around and see others so much worse than me and it tears my nerves up that I can’t handle this. I see a lot of you that have so many more treatments and radiation on top of that and that tears my nerves up. I guess I have this in my head that I’m weak,, and why can’t you just do this. I’m my own worst enemy sometimes. In my head it says girl what the hell are you crying for, you have minor stuff and you should be getting through this with no complaints. You were so much luckier than billions of people, so shut up do what you have to do and be thankful. How dare you complain or want to give up. So it’s a struggle to know I’ve been through a lot and I’m doing good and give myself a break.
2019whatayear my info:
- Invasive or Infiltrating Ductal Carcinoma (IDC) - March 13, 2019
- Left, 1cm, Stage IA, Grade 2, 0/14 nodes, ER+/PR+, HER2- (FISH).
- 4 AC , 4 Taxol due to score of 25 on oncotype and I just turned 41.
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I find it interesting that the type of chemo used varies so much. My grade was more aggressive, but they chose a shorter, less aggressive chemo regime for me.
- Invasive or Infiltrating Ductal Carcinoma (IDC) - April 17, 2019
- Right, 1.1 cm, Stage I, Grade 3, 0/4 nodes, ER+/PR-, HER2-.
- 4 TC due to score of 50 on oncotype and I just turned 44.
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