Starting Chemo July 2019
Comments
-
fairydragonfly I agree 100
0 -
Hey July 2019 Chemo People.
I was thinking about myself and all of us this AM and I have to say. IMO we are all doing an amazing job with all our of treatments and surgeries etc etc! This shit is hard and we are all still out there being functioning human beings.
I give us all a standing ovation. :-)
Hope everyone has a good day with minimal SE. Today is the worst day for me on the Taxol- but it 's still better than an A/C day.
-Victoria
0 -
2019whatayear couldn’t have said it any better 🙌🏼🙌🏼 I hope you get to feeling better ❤️❤️❤️
0 -
It's Friday. That means I'm still boosted with Steroid Energy! Just popping to say hi to everyone. #5 Taxol is done for me - 7 more to go, 48 more days til my last day of chemo. Can't wait to be done. Overall I'm doing well my white blood cell count was low but not so low as to need any shot or to avoid the public. my fingers and toes are crossed that I can keep my white blood cell count decent and that I can avoid illness. :-) Hugs everyone!
0 -
Happy Friday Victoria and all!
Steroid Energy!! It's great during the day...not so much at night. Congrats on completing 5 Taxol treatments!
I am through 4 TCPH with 2 more to go. I met with my surgeon and am scheduled for BMX on 12/5. My original plan was to wait til after Christmas but the surgeon was not comfortable going 7 weeks between the end of chemo and surgery...said that it was too long a time to give the cancer a chance to regrow. Has anyone ever heard this? My tumor is completely gone and no sign on ultrasound of disease in the one node that was affected.
Anyway, for those that have been through the surgery (BMX with TE) can you give me a heads up on how you were feeling a week to 10 days after surgery. I am scheduled for just day surgery with no overnight stay. I know everyone is different but just trying to see how I could be feeling around Christmas.
I hope everyone is doing well and can enjoy a weekend with minimal SE.
Julie
0 -
Julie-
I find what the surgeon said to be very unnerving. I couldn't really find any good study info on that via google. but it was hard to get a good search going- I mean your ILC is listed as grade 1, that's slow growing. Now if he said let's get it done before the year is out so you can get it done w/o it going into 2020 and re starting your insurance deductibles.
Two more chemos for you ---woooo hoooo!
xoxo
Victoria
0 -
Julie - Really, no hospital stay? That seems strange to me, though, they are telling me 1-2 days for UMX and reconstruction. I hope all goes well with your surgery! Great to see you have only 2 more chemo! Way to go!- Diane
0 -
Julie check and see if they are
Doing a 23 hour stay - that’s what I had - the 23 hours starts
From when you leave the recovery room so yes you stay overnight
0 -
Victoria and Diane,
I bet you both are right. My surgeon probably gets around having to admit patients by releasing them before the 24 hours are up. When I questioned no hospital overnight She and her PA said they have great success with this method. I never asked when I would be released.I am meeting with the PS in a couple weeks and will clarify that. I’m not a big fan of hospitals so this will work fine with me, hopefully 🤞
0 -
Haven't checked in in forever, just an update. I have Taxol #8 of 12 tomorrow. Doing okay ... getting bouts of depression re: the length of treatment. This is a year of my life, and still at the end of it I don't think I'll have peace of mind. I will always feel it's just a matter of time before the next thing pops up (this is my second bout with cancer, I never got to the five year free mark). As far as side effects, the Taxol is okay ... I'm experiencing some neuropathy in my right foot, constant nosebleeds, some diarrhea. All in all, it's a walk in the park compared to the A/C, which was pure hell.
I met with my MO and went over the plan going forward. After chemo ends on 11/19 we'll take a break as I'm going home to UK for Xmas, will start 6 weeks of radiation in New Year, then having a total hysterectomy in March, then exchange surgery at some point in early summer. Such a long, old road! Fed up of the lot of it! I also asked what the plan would be going forward to detect cancer, because I won't be having mammos. He said "we'll just keep an eye out for symptoms." HELL NO, MATE!! That is just not good enough! I don't want to wait to the point that I'm showing symptoms. I will pay for an MRI out of my own pocket for the peace of mind.
0 -
I hear you Britgirls! Thanks for checking in - I've been thinking about you! I *think* I've made peace with my time line of treatment (finish taxol 12/5- radiation should start approx 1/6. I figure I'll be all done by the time Valentine's Day rolls around and I guess I will dislike Feb less this year (Feb- worst weather month of the year!) then plan the ovary and tubes removal. I mostly try to focus on where I am now and also visualize summer 2020- me with my hair sitting in my pop up pool I'm gonna get sipping a lemonade---I figure I"ll be done with all treatments and surgery by early May and be ready to really start training for the Chicago Marathon come Memorial Day weekend.
My SE aren't bad so then I worry: Is the chemo doing enough to make sure the cancer doesn't come back? IF IF I had a dollar for how often I worry about the cancer coming back already, whoo. I'd have all my bills paid including paying the house off. I told myself just a couple hours ago that that particular worry doesn't really help me--and I'm right but not really good at listening to myself. Those around me tell me I have an awesome positive attitude about all of this --it's only because I have years of putting tools in place to avoid depression and avoid having to take depression meds ( I have taken them, I'm pro taking them I don't like the side effects of them for me). Nevertheless, I'm struggling about where to put the worry about cancer coming back. I journal and control what I can (diet, exercise so forth)--but I think once I'm done with active treatment I'd probably be best served to get a therapist. I know there are BC support groups all over, but I just can't. It's not for me--
In case I have not mentioned this already, I do have a cancer penpal - they call them mentor angels, via the organization Imerman's Angels. Our talks always leave me hopeful and knowing that there is someone who totally, totally gets what I'm going through right now. It's free and you can sign up online for the service. I am so grateful for what they offer- that's the organization I'm going to run the marathon as a charity runner for---It will be my 3rd marathon and part of my year long 2020 no cancer turning 50 extravaganza of life.
-Victoria
0 -
Hey ladies! Been a lil while for me 😩 did my last taxol with 30% reduction last Weds. So my next step is DIEP flap early Dec. Still down from treatment but hoping Weds or Thurs will be better and able to finally eat.
I 100000% agree of not being ok with just checking blood work and symptoms. I can’t comprehend why there isn’t anything detailed that we can do to check for reoccurrence. That is one of the 1st things I asked about scans and he said unless I wanted to pay 8-10 grand out of pocket we will do blood work 🤬🤬 which is bogus in my opinion. Just because insurance won’t cover it.
I had my BMX in May and it wasn’t anywhere near as bad as I thought it would be. It wasn’t a breeze but I was able to maintain. Got myself in the tub the next day, shaved my legs and bathed myself. A detachable shower head and chair is a must. The drains are a pain in the ass. The bra thing they put you in from the hospital is TERRIBLE. It irritated my skin so bad. When I went for my follow up she recommended I go to the specialized store not too far from then and she fitted me with 2 new bras and inserts. The bra felt sooooooo much better on my skin and didn’t irritate it. But I hated it with the inserts it was so uncomfortable. I was never the one to hate wearing bras or at the end of the day say shew let me take this bra off, but that one I hated to wear. It made me hurt and I finally quit wearing it. The other thing that I know bothered or hurt was the burning pain that I had. Phantom pain maybe is what it was called but it was terrible. One thing I did was read a lot and got myself worked up cause some women said it lasted for months and I thought OMG I will die. But it lasted a couple of weeks and went away finally. But over all it was a lot easier than I anticipated.
So now I’m on my info journey on tips and tricks on the DIEP Flap.
I hope each and every one of you have a great week. Stay encouraged. And it’s ok to have a good cry, let it out, then keep going. What we are going through, been through, or will go through WE ARE STRONG, WE HAVE LOTS OF LOVE, SUPPORT, AND PRAYERS. WE HAVE EACH OTHER 💕💕💕
0 -
did forget one thing so my port, I asked about getting it removed and they say 6-12 moths 😳😳😳 are you kidding me? I want this out now. My reconstruction surgeon said 12 months. I am really bothered by this. I want it out now.
0 -
1. Congrats on finishing Chemo- how will you celebrate!????
2 . For drains and showers I used a fanny pack - that worked
3 . 6 months ? A year???? Cmon ! Whhhhhhyyyyyyyy....
0 -
I took 10 dozen Krispy Kreme donuts to the staff, patients, and families that day and cried a lot. . I came home and went to bed 😂😂 no celebrations yet. Just trying to get over this last week of hell. BUT I will say reducing it 30% has reduced the pain a lot. Just really really weak. But Weds or Thurs of feeling better and being able to eat is coming soon. I’ve called the BS and will call back again tomorrow to get a answer from them about getting this port out. I want it to be gone because I’m done with this crap and want it gone to seal the deal. They said they like to keep it in just in case. I can assure you I won’t have a just in case. I won’t do chemo again. I’ve done what they told me to do and I’m over it. That’s why I want to go ahead with my surgery. I am so over this mess that I want to get it all done and move on. I feel like it’s like you can walk but they want you to be in a wheelchair. My husband thinks I’m being crazy another it but he just doesn’t understand.
Forgot again lol to add to the question of DMX I came home the same day. I didn’t stay 23 hrs either. It was that evening when I went home.
Another strong thought/question that I have is why Dr’s or women not choose BMX immediately upon finding out? Not judging anyone’s decisions at all but in my head get them off now to reduce chance of having to go through it again? As soon as I got my call of it’s BC I immediately said they are gone. I couldn’t imagine having to go through this a second time.
0 -
I immediately said BMX and they said I wasn’t a good candidate for reconstruction. After they explained the procedure (I thought you just get implants) I told them I didn’t care about that - I just wanted them removed. Then they went on and on and on and on about chemo, radiation and lumpectomy, like there was no other choice for me. I was tired of waiting for treatment, wanted the cancer gone, and wasn’t in the right frame of mind to argue any more. I’m so physically tired y’all. Hanging in there but the SEs from the Taxol are scaring me. Fingers, toes, and now face neuropathy. Stomach is extended and constantly hurts because gas x and other gas meds not working. Im having random pain in different parts of my body - deep bone that takes my breath away. I talk to doctor every week before infusion but over counter meds aren’t working.
0 -
Melmax I PROMISE it was HELL for me too NOTHING helped the pain. I had to pay there are ride it oit. Each time wanting to die I hurt so bad. Mine was like contestant contractions everywhere all over my body. Like lighting bolts zapping me everywhere. He reduced my 3rd one by 20% and maybe took a piece of sand pain away and it lasted longer. He said I was only 2nd person in his career that had a reaction like that and I must be allergic 🙄🙄 My final one he reduced it by 30% and that has helped with the pain. They gave me a few diff meds and Percocet and nothing touched it at all. For me Taxol was 1000000 times worse than the AC. I def know and understand what you’re going through and I’m so sorry. That’s what made me second guess doing my last one because I didn’t think my body could take it. For the neuropathy do you have a local chiropractor that does laser therapy? IF SO GO SEE THEM!! It def worked 100% for me!!! They did the laser on my feet. I never had problems with my hands. Will say extra prayers for you!! Hang in there 💕💕
0 -
So glad to hear how everyone is doing.
Jjpope, When you mentioned about wanting to get a BMX immediately upon hearing you had BC I had the same reaction. Unfortunately, my MO and BS were in complete agreement that the standard of care for triple positive BC is chemo first and then surgery so that’s why I’m just now scheduling surgery. Thanks for letting me know you were an outpatient for your procedure. Part of the reason for not getting admitted is because my surgeon doesn’t want me exposed to all the germs in the hospital. Thanks for the tips on after care.
Melmax, hang in there. I had Taxotere instead of taxol but I understand they are very similar. I’ve had terrible reactions also. The stomach pains and gas are horrible. Praying for you.
After my surgery on 12/10 I start radiation also. Should be about the same time as Victoria and britg
Question...why so long between BMX and exchange surgery? I thought I’d be through in 4-6 months. It looks like some of you will be closer to a year. Is that in order to get through radiation?
I don’t want my port for a year after treatment is over either 😿
💪💪🙏👍🕶💕
0 -
I chose not to do reconstruction at the same time as my BMX to give my body time to heal instead of trying to heal 2 things on top of each other. And out of the mouth of the first PS I saw he said If you were my wife I would tell you to wait. That’s all it took for me. Boy am I glad I waited because the chemo was a HUGE HUGE shock to me. If I had to do over I would def choose what I did and wait and let my body heal then do reconstruction.
0 -
Same Jjpope. One surgery is enough for me and I too was like - these boobs gotta go. But the doctor was like hold the phone. Let's get an MRI and have a better idea , lumpectomy etc etc. I said I want genetic testing my grandma had ovarian cancer. doc said cool- I said if I have the gene these boobs are gone. My surgeon agreed. I got test, results BRCA-2 BMX for me. I called the BS like 5 seconds after my results to schedule BMX no reconstruction and they were like ... you've gotta see the PS -- you've gotta have informed consent. I'm like. I don't want reconstruction. But fine. I'll go - the BS nurse said I am holding a surgery date for you. IF you decide you don't want reconstruction we can schedule this day. I called the bS nurse from the parking lot of my PS consult and said. I don't want reconstruction. And I got my date. which was great because the sooner you start treatment the better and I was very keen to get the cancer out. That being said. For whatever psychological reasons, I was not very attached to my boobs before they started harboring cancer- so it wasn't gut wrenching for me. By the time I was scheduling the surgery I was soooooooooooooo tired of doctors feeling me up.
Also Jjpope, take a few weeks to get past the nadir of the chemo and do something super fun to celebrate! Then come and tell us about it!
Melmax big hugs - SE sucks. I hope you have a good day today. Stomach problems are misery. xoxo
Re ports. So is it basically they want us to keep them in case the cancer comes back w/in a few months? How often does that happen - what are the statistics? I need to know like, now - how much do I have to be worrying. I mean I'll keep it during radiation and maybe when I get the old ovaries and tubes out , but after that? Cmon. and I better stay cancer free. Damnit!
-Victoria
0 -
2019WhataYear, I love the thought that you are planning on training for the Chicago marathon! Wonderful to have a milestone like that to look forward to. Before all of this health nightmare, I too had planned on running a marathon to celebrate turning 50 in 2020 (it'll be my fourth). Feeling how I feel now, maybe I'll plan on a 5K! I have done a couple hikes recently (field trip with my daughter and a Scout activity). I got winded like you wouldn't believe. It actually scared me how tired I got. I know it gets better ... I am just shocked at how little endurance I have now.
So I am wasting my day here at the infusion center. My port has always been troublesome (I have to recline, cough and do all sorts of maneuvers for them to get blood return. Well today it just ain't happening! They've given me the Cathflo (alteplase) and still no blood return (I've been here 2.5 hours already), they tried to put in an IV and it blew. I'm suggesting they try to re-access the port, but they want to wait another hour for the Cathflo to work. Ho hum!
jjpope, that is nonsense they're telling you about having the port for a year. My surgical oncologist said it can come out right after chemo ends. Speak up if you want it out. You are the boss!
As far as getting mastectomy before or after chemo, I just went with my doctor's recommendation. And that was for surgery first. It's weird there's so much variation in the order of treatment.
Love to you all!
0 -
I spoke with one of the girls that I bonded with immediately that I met at the BS office today and she said the same a year and some even 5 years..... WTH yes I 100% understand if I still had more to go or still had cancer but I DONT. She said I could schedule an apt with BS to discuss it. I also asked her opinion about the PET scan and she said def insurance doesn’t cover it unless there is a medical need. Well in my opinion and peace of mind it IS DEF A NEED!!! I don’t see how they can say it’s not if you were diagnosed with cancer 🤷🏼♀️ Its BS if you ask me. There are so many things that I want to scream to world and maybe why this is why this was my plan in life. Maybe I will have a voice to help others and make changes 🤷🏼♀️
My port for the last 3 times has not given blood. It will damn sure get that chemo but no blood. My best friend said that the blood has gotten too thick in there and they need to put some medicine inside it to break it up.
0 -
fairydragonfly what has your dr said about the removal of your port since you’re done?
0 -
jjpope1 I will check with chiropractor regarding laser therapy and I’m having my port removed after lumpectomy which hopefully is in December ???? Who knows. It hurts when I lay down, hurts when I sleep on either side. Most if the time it feels like I’m being choked. I’ve complained to the surgeon and oncologist numerous times and they say it’s fine. I hate it and want it gone. I understand it’s better than busting a vein but my complaints are real. 0 -
This is my hair after 4 AC and 6 Taxol, I look like a chia pet. Lol0 -
my port doesn’t bother me too bad unless it’s touched or like if I had a undershirt on and it rubs it. But it’s the simple fact for me I’m done and completed chemo and I want it out. To close that chapter.
Melmax growing good!! Mine right now is lil stubbles 😩😩 wish it would come back as strong and fast as the SE’s lol.
0 -
That isn’t new hair. That’s what hasn’t fallen out yet. Cant get a good picture because my walls and hair are so light colored. I’m told it can continue falling out up to 3 weeks after chemo? No need for a costume this Halloween. I can be the old lady in the Flowers in the Attic series. 😁😂
0 -
Good God, I look shiny bald. There's a layer of peach fuzz. It's just what remained after I shaved my head. Don't think there's any new growth.
0 -
So britgirls, I’m in the same boat as you with regard to hair. Three weeks after finishing Taxol, I still haven’t any hair growth and my eyelashes have started falling out. I didn’t lose any in 13 weeks of treatment and NOW they fall out?!
My BS told me I could have the PS remove the port now that I’m one of his patients. But no one has said when I can have it taken out. Fifteen weeks after I had the port put in and it still hasn’t healed completely. I don’t think that bodes well for my DIEP surgery 😬
0 -
just saw this posted on fb and thought it was interesting. It has good info and a new surgery the Apex Flap that I’ve not heard of. I’ve messaged my PS to see what his thoughts are and if he’s done one. If you navigate the site has other good info and pics.
0
