Starting Chemo July 2019
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Best wishes for a breeze of a recovery Maggie!
Melmax here is what I take medicine wise altogether.
Fri - I usually need to take 1 100mg Gabapentin. (restless legs), 20 Mg generic Prilosec. 1 generic Clartin. Gummie Multivitamin 1-2 stool softeners depending.
Sat- Prilosec 20 mg, Generic Claritin and the gummies
Sun - same as Sat.
Mon same as Sat
Tues same as Sat
Wed. same as Sat plus 12 hours b/4 treatment 4 mg Dexca-the steriod 1 100 mg Gabapentin and 1 stool softener. Repeat the 12 hour routine prior to the treatment (minus the Gabapentin) before going to treatment - take the Gabapentin.
Thursday - stool softener when I get home from the treatment ( so basically 3 during the 24 hours btwn Wed PM and Thurs PM. at Treatment I get 10 mg more of the Dexca steriod, 20 mg of the prilosec, 25 MG of Benadryl and whatever the reg. dose of Taxol is. In evening I take a Gabapentin (before bed)
Friday- same as sat plus a stool softener w/Bfast and in late afternoon (if needed)
I work Mon - Wed. I don't sleep well on Thursday. I'm really glad I'm able to be off on Friday due to the lack of sleep.
Can they give you anything to resolve your stomach pain?
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Oncologist said take gas x and to double the dosage on the box so it says take two with every meal I take 4. Also stool softener and senna laxative. Same instructions. The box says take two so I take 4. My stomach stays distended like im 6 months pregnant due to the gas. Yesterday they said add baby gripe water to the mix. Also I don’t eat gassy food
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good luck maggie0626!! Keep us posted on how you’re doing.
Melmax I had Percocet but it didn’t touch it at all. There was one more but I’ll have to look at it when I get home.
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Melmax that's so miserable. Ugh.
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Good morning Ladies!
I was reading through the posts and I too am worried about this just being the first of many cancers - I don't want to spend the rest of my years worrying about where it may spread to. I think that's part of the new normal though - I don't know how you can have this type of scare and not live in it every day. I am working through using that scared energy to improve my overall health on the other end of this. I am a planner, I like to know next steps but not look too far ahead. So right now my focus is on finishing these treatments (4 more to go!) and getting things lined up with my care "team" whatever that means. After reading your posts I have realized that my care team is a joke, I have had to chase things down and figure out what comes next while my MO is leaving at the end of the year, my surgeon is going on maternity leave at the beginning of the year and my "Breast Cancer Navigator" can't navigate an email or phone call. And with all these things culminating at the same time - I had an Ah ha moment. I am and always will be my strongest advocate. I know my body - I've lived with it for 45 years - so if I think something is not right, I will act on it. But we also have to trust the treatments that are available to us here and now. The future holds wonderful breakthroughs but they are not ours yet. They will protect our children by learning from what they see in us.
So what that leaves me with is this - I can control only so much. This year has brought more difficulty than I ever thought I could live through. If you would have told me in January all the things this year would bring I'd think "what cosmic force did I piss off? and how do I make it stop?" Then I got a charm from a friend of mine who knows the full depth of the struggles (more than just the cancer has happened this year). It says "You were given this life because you are strong enough to live it". I'm still standing (some days barely) but this HAS GOT to be the call for me to improve myself and help others in the process. This really makes you look at everything in your life and re-evaluate the path moving forward.
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Melmax, the other meds they gave me for my stomach was dicyclomine 20 mg’s 1 tablet 3 times daily as needed. Didn’t work for me but that doesn’t mean it wouldn’t for you.
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jjpope1 I will ask oncologist if that med would help me. Thank you!
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deanders, what an amazing post. I have the same mindset as you. Advocate for myself and others and live as healthy a life as I can. There's only so much we can control.
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Yes deanders, thanks for taking the time to post. I'm working hard on finding that balance. Not so much a Seize the Day and a give the day a big squishy hug. Today is an exciting numbers day for me. It's Chemo/Run streak equilibrium day. I preface this by saying. 1. I have run for years and years. 2. I run really slow really it's much more of a jog I'm doing but I like to call it a run LOL. Anyway So today is day 25 in a row of running and it's day 25 til I'm done with Taxol. After today the run streak keeps getting longer and the days left of chemo keeps getting smaller. Woo Hoooooo.
Happy Sunday everyone May you have no SE and hair growth! :-)
Mini Vent for today: As I start thinking about getting my ovaries and tubes out in the first half of next year, what shows up at my doorstep, but a letter from my Gyn! She no longer takes my insurance. GRRR ARG. Now I need a new gyn.
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Hi all,
I started neoadjuvant chemo for triple+ cancer in July, on my last round now. It has been rough, and it took me a long time before I could even look at this site.
I do have a question (filed under "there is no dignity in chemo"): I have had horrible constipation throughout, and as a result both hemorrhoids and a fissure. Does anyone know of any hemorrhoid suppositories that are paraben-free?
Has anyone here with triple+ moved on to just the herceptin-perjata infusions? How are the side effects?
My surgery is scheduled for next month and I am so looking forward to it!
Hope everyone else is doing well, and nice to meet you,
Wimpy Dragon
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Deanders, your post was so great! I’m not as proactive as I should be, but your comments were a good reminder that I should be.
2019 - good for you that you are still running! It’s gotten cold here rather suddenly and I’m discovering that the neuropathy in my hands makes the cold really painful. I’m hoping that I will adjust over the winter and it won’t be so bad.
Melmax - hope you start to feel better pretty quickly after you finish the Taxol. It sucks to be that miserable for eight weeks.
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dvhmouse- How was Hawaii? I hope you don't have to leave your house btwn now and Thurs- it's going to be like January cold!!!
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2019whatayear - Hawaii was fun! We had a good time at the wedding and visiting with my husband’s family. It’s hard to believe how cold it’s gotten already. My surgery is Wednesday and tomorrow afternoon I have to get the radioactive dye put in, too, so I don’t get a chance to hide from the cold, unfortunately. I’m a lot more nervous than I hoped to be. Ah well
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Bah ! Well I hope it's not too brutal when you venture out. I personally like the number 13 so I think it's a great day for a surgery. Not too early or late in the month. Right in the middle of the week so less likely anyone is operating on too little sleep. And you should be feeling pretty good by the time Thanksgiving rolls around :-) Best part of the surgery is you get to sleep right thru it. :-)
xoxo Best wishes for a really easy surgery and a smooth sailing recovery!
-Victoria
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Thanks Victoria!
Diane0 -
Good luck on Wednesday Diane! I’ll be praying for you and your surgeons for an easy, successful surgery.
I just had my appointment with my PS and am scheduled for Dec. 10th. Can’t wait!
Let us know how you did, when you feel up to it.
Julie
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Diane, sending best wishes for Wednesday! 😊💕😊💕
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Good morning ladies!
Maggie0626 and dvhmouse wanted to wish you good luck tomorrow. Sending prayers for you to have peace and comfort, for the doctors/staff steady hands and knowledge, for a fast and easy recovery, and a complete healing over your body. Much much love to the both of you!! 💕💕
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Best wishes for your surgery! Here's hoping all goes smoothly.
Once again I come to this thread and read just what I need to see. I am just starting the process of getting my surgical team together and talking options. My chemo ends December 6th and I was struggling with not knowing the next steps so I decided to get things rolling with decision making discussions. I must admit that I had a little breakdown with all the decisions that need to be made and the time frames that I will need to wait for. It just reiterated what a marathon this truly is. And there are so many decisions that seem to be on the fly - are the margins clear? will I need radiation? Did they get it all? what's an expander? prosthetic nipples? (who knew). This is all stuff that six months ago I didn't have a clue about and now I have to make decisions for myself that are life changing and life saving at the same time. Who the hell am I to make these choices? I don't know the right answer. It's scary and overwhelming and with the chemo brain I can't think straight let alone make a life altering decision. Hell - I couldn't even get myself to work today.
How did you all decide? What factors did you consider when trying to determine things like should you have both breasts removed or just the cancerous one? I feel like my life has been put on hold for this and I just realized how long that means exactly. How do we live a life while fighting this? Does it get better once the chemo is done and not sapping all my energy and motivation? Just feeling like this train sped up and all I want is to get off of it.
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Thanks folks for the good wishes! I’ll let you know how it goes.
Deanders - You absolutely nailed it. I have frequently felt like I was making life-altering decisions without enough information or time.
Di
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deanders, we are on the same schedule. I have TCHP, number five this week and my last is Dec 6th. I have decided not to have any reconstruction because I didn’t want the extra surgeries and want the fastest recovery possible. Granted, if I were younger, I might make a different decision, but flat and smooth is the only decision I didn’t agonize over.
I went over the 60 day mark between biopsy and treatment, which I understand is not good, so now I’m worried that the holidays will interfere with my surgery. Did your doctor mention how long you can wait between the last chemo and surgery?
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Shelligirl - when I went to the Plastic surgeon, he said 4-6 weeks between end of chemo and surgery. I don't know what the deciding factor is though. I don't know if they check blood counts or if it just depends on when they can get an operating room. I have an appointment with the general surgeon on Monday and plan to ask them because so much of this seems to hinge on what they say. They determine if they can get it all, if it's spread etc. I'm still not clear on how long I have to wait between surgery and radiation, if that's needed and how that's decided. That's one of the things that I feel like a cattle call on - this is the typical path so they are shoving me down it. I understand that the radiation is an insurance policy but you would think they would have a better idea of when it is needed or not. That's what I really struggle with is deciding what is best for me when the doctors give me the "You can do this or that, either would work" options. You'd think with that many years of school, they would be more confident in telling me what I should do and what is best for me based on what they know. What are your docs saying about radiation therapy?
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Hi,
Shellgirl, I am on almost the same schedule also. I am having my last TCPH tomorrow(YEAH!!) and then surgery is scheduled for Dec. 10th. I originally asked the BS to do the surgery on Dec. 30th so I could enjoy Christmas with my kids and grandkids. She looked at me like I was crazy. She said 3-4 weeks MAX after the end of chemo for the surgery. If I waited longer I would be allowing any cancer seeds left to regrow. I have had a PCR so seeds is all that is left for me. If your tumor is still there I would imagine it might be more important to do it in the suggested timeframe but I don't know. Just thought I would share what my BS said as I'm sure there might be different opinions. Good Luck!
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Sending good vibes for precise surgeries and easy recoveries to you Diane and Maggie xoxo!!!
All the research I have read says surgery and chemo asap after diagnosis. Def. Surgery as soon as possible after chemo. They can't say for sure on the radiation until after surgery as it can be based on what they find during surgery. IE. the RO said I most likely didn't need rads as I had one mass that was far away from my chest wall and was having a BMX and the node at my biopsy was clean but then I had surgery and they found some cancer in the sentinel node that was supposed to be clean so now I will have rads.
For me I chose flat - if I didn't have the BRCA I would have gone lump- but due to BRCA 2- bmx. I had no desire for reconstruction b/c I wanted to keep surgeries to a minimum and I didn't want numb lumps on my chest. Of course I am happily married for over 20 years and 48 years old and had a bit a love hate relationship with my boobs anyway so.. that was a factor.
Time btwn surgery and rads is like time btwn surgery and chemo - 4 weeks ususally.
Julie I am confident you will enjoy Christmas even better having the surgery a good 2 weeks in the rear view mirror!
Hugs all!
-Victoria
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I do know my PO said I had to wait 4 weeks after chemo to ensure my blood work was ok.
I from day one with no doubt hesitation NOTHING chose BMX. As soon as I was told the words breast cancer I already knew the girls were gone. BS wanted to do lumpectomy and I said absolutely not. And BRCA gene was negative. Here I am 40 yrs old and I'm way too young for this to be happening. So all I knew was that if I did the minimum what would happen or would I do if it came back a couple of months years later. I wanted to be one and done! Now looking back I def can't or never would want to know if I didn't do BMX and it came back and I would have to go through this crap again..... HELL NO TO THE NO I WOULDNT DO IT. I'm not sure if I could mentally handle it, much less my body going through it again. It for me wasn't a hard decision at all. I know we are all different and have different thoughts but it was a no brainer for me.
Reconstruction...... I did not do immediate reconstruction and I'm thankful I didn't! 1st PS I saw said if I were his wife he would wait. That's all I needed to hear. He also said that's a major surgery and then another on top. So if the mastectomy didn't heal properly he would have to go back in and take the reconstruction part out first then get to mastectomy part. So more surgery after I already went through the first one? No thank you. I'm so glad I waited and gave myself and my body time to heal. And I then got the news about chemo so I and double thankful I waited!!I over think and process EVERYTHING and from day one I went into freak out mode, need to know everything, and plan everything. I met with 2 PS before I did a 3rd one and after the 3rd one I walked away and felt like a 10,000 lb weight was lifted off my chest. 1st PS could only do implants and I was interested in DIEP so went to 2nd PS. He talked over my head and even though I understood him I didn't like his demeanor at all so I left. 3rd PS sat and talked for ever with me and made me feel soooo much better on the choices of implants or DIEP. He said not many choose that due to how big of a surgery is and that I still had questions and he knew I needed to peruse it. So he referred me to Chapel Hill to the 4PS that I am with now and will do the DIEP Flap on 12/5.
There are so many decisions we have to make. In my opinion the more you know the better off you are. I also have learned so much from this site and my group of friends here in our chemo chat. I turn to you now before I do anyone else. Look at all your options and decide what you think is the best. ALWAYS ask questions, and if you have a dr you're not comfortable asking questions to they are not the right fit for you. Find someone new!!!
Decisions overwhelmed me the most I think in the beginning. Not so much for the mastectomy part but the reconstruction and chemo (should I do it based off they got all my cancer and it would be a preventative. Also I have always had in my head that this entire cancer thing is a money racket too. It was hard for me to know am I/we doing this to help me or make money for them.)I have finished my 8 rounds of chemo, scheduled my surgery, and waiting for all that to happen and it feels like it will be here tomorrow 😳😳 I'm so scared of the post surgery, and how bad the pain will be.
I've had a rough couple of days mentally because I'm so sick of being sick, looking sick, deformed, just dealing with all this is building in my brain and I'm worn out.I have a bad attitude right now. I'm so swollen and I look pregnant, it gets worse after I eat. I look crazy. My hands and looks like my arms are swollen, sometimes my feet. I'm just over this crap. Did go back to dr yesterday and he sees the swelling but doesn't understand why other than possibly effects from the chemo 🤬🤬 my blood is good so he suggested probiotics and acid pill daily. And do a ultrasound of my stomach so I would have to take more time off work. It's just so frustrating that I can't be normal again. Then I get in my head again and say Jessica shut the hell up, you have it so much easier than a lot of people dealing with cancer and it could be so much worse, you don't have the right to be mad or upset.
I hope this has helped answer some of your questions and if I can answer any other BMX questions please let me know.
Much love to you all
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just saw this on fb and def need to keep reading it!
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jjpope1 I like the Facebook post but it's ok to be 😡😡😡 too. Most days, I'm thoroughly pissed about this whole process. Sometimes I'm grateful that I'm not dead yet. Some days I'm just literally sick and can't fel anything but symptoms. Some days I'm in a good mood and can forget about it for a few minutes at a time. This board has helped me so much and although I'm feeling sick right at this moment I'm also feeling grateful for your posts. Give me a minute and I might start feeling pissed again, LOL!
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Jessica you can be as mad sad frustrated as you want here anytime! Vent away ! No complaint is too minor!
:-) hugs all !
-Victoria
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I feel like I’m waiting for the news a baby has been born waitingto hear how Diane and Maggie are doing.
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Jjpope, you wrote everything I have felt and thought. I over research and over analyze and as a result, am furious that all I get is assembly line standard of care. I know for a fact that certain drugs only improve outcomes by barely 1% and cause significant side effects, but are standard of care. I feel like a kid again and the adults decided what’s best and I am expected to comply. It’s madness!! Same with my PS. He didn’t offer up any of the risks and if I had not done my research and knew to ask, he might have gotten the sale. It’s not a tummy tuck and a boob job, and the finished product looks nothing like what a woman without cancer would look like if she had those two procedures. There are tons of women that are extremely happy with their reconstruction, and I am honestly and truly happy for them, but not everyone is that lucky and many need revisions.
I have two friends that never questioned their doctors, did what they were told, no supplements, no special diets and they are both doing great. They thank God and their doctors and seem really happy, so I wish I could change my attitude and be a good girl...a smiley cancer warrior but it’s probably not going to happen.
This site is a lifeline though. I would have thought I was crazy or a hypochondriac without being able to learn about SEs here. Each chemo has gotten a little easier because you ladies have shared your tricks and solutions. My oncologist told me to see an ophthalmologist and that my retina, coincidently, had become detached because I was seeing light flashes, but thanks to this site, I learned that others had the same experience.
I am very grateful for you all and hope I’m not stepping on anyone else’s experience.
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