Starting Chemo March 2015

Jackbirdie

thanks for understanding, Special. There really is too much going on.

I felt I couldn't wait the hour so I came home cuz I needed some JACK! We are sharing the heating pad

I'll go back later and pick it up. The effort will be Herculean, as once home it is very hard for me to leave again.

But I soooooo want to feel better.

Italychick

Jackbirdie, good call on refusing the Levaquin. They gave it to me for a UTI over 4 years ago, and I ended up with inflamed ankle tendons and foot neuropathy that took me 2 years to deal with. So now I just say in all my charts "allergy to fluoroquinolone" and that kills all the Levaquin like drugs, like Cipro too. That stuff was nasty - I can't tell you how much pain it put me in. So is it bronchitis? Sorry you feel bad. Snuggle little Jack. Are you getting any of this gloomy rainy weather? It looks like it is all the way up to Washington.

SpecialK, makes sense. Even my MO was "equivocal" on Herceptin. But then said ultimately she would do it. She is a complete trials person, and won't recommend anything that hasn't been proven as an appropriate treatment plan. I consulted with my husband and kids (the people who care most if I live or die), and they all said it is so powerful that if there is a small chance it will help, do it.

Carrie37

No worries Katy! I hope you are feeling better quickly. I have asthma (well controlled now) so I know what it's like to just want to breathe. Not that this will help you now but whenever I have to walk in a prescription I stand or sit right at the pharmacy. They usually have it done in 10-15 minutes. Hopefully you won't need a next time but just in case. What a shitty day for some of us! I am back to the thoughts of friends who kind of hide away during a cancer diagnosis. I have a friend though who has really stepped up and it has surprised me in a good way. Every infusion day she sends me a message just to say she is thinking of me. Warm fuzzy for the day. 😊

Jackbirdie

the weather has been off and on today. Enough on to find a smile among the nettles.

It is bronchitis with some kind of "infiltration" in left lung. I was too tired to ask. I know I am very sick. Very weak. But optimistic I can bounce back quickly with the big Z. My labs weren't actually that bad. And yay for my liver! That is s FRIKKIN MIRACLE. So happy about that.

Fwiw Theresa, I agree it's totally worth trying. Good for you. You are tolerating reasonably well, nobody could make a better candidate.

SC_Coqui

On a positive note for the long day today.

In the chair across from me was a woman same age as me getting Herceptin and Perjeta. We were chatting about diagnosis and dealing with all this while managing work and kids. She happens to live in the same town and both her sons attend the same taekwondo school as my son. She's getting her chemo pre-surgery.

It's the first time I've met someone there that has a similar family life as me.

ninjamary

BB I'm so sorry. I would personally go full bitch mode because I find that works. I've tried calm and professional and it got me nowhere (with my health...not my personal life)

Please keep us posted.

ninjamary

Well I posted the above too quickly. Go BB!!

Had my first Taxol today. I got nauseous pretty much right when I sat in the recliner in the infusion room. I hate that room anymore. 30 min of premeds and an hour of taxol. I went to the gym right after. Cardio wise-I sucked. and weight lifting was about the same. Though I felt like a bad ass in my do-rag. So there is that. I do feel better mentally. More awake tonight than I have been. For some reasons though I always feel great on the days I get chemo. Heck I'm doing two loads of wash and just cleaned the kitchen. I'm like "amazon mom".

Oh and my fingers are swollen too. I thought it was because I've put on 10lbs. I'm going to have to pull the rings off soon too.

SueH58

SpecialK - So why would docs use Herceptin vs Perjeta if Perjeta is more tried and true??? And wny do some get both???

SpecialK

sueh - Perjeta is a much newer drug, and is only FDA approved since 2013 for neoadjuvent use with Taxotere and Herceptin, not on its own.  Herceptin has been around much longer, has been used for early stage Her2+ BC for about 10 years, metastatic BC for a bit longer. Because Perjeta has specific criteria for use it is not given to all Her2+ patients.  Those who do not meet the Perjeta minimums receive chemo, in differing regimens - AC-TH, TCH, or Taxol + Herceptin. 

SueH58

Special K - I don't know what you do for a living, or why you know so many details, but I'm curious as to why more people are not on CMF. I am taking that regimen. My Dr. trained in New York--maybe that protocol is more known in the East. It is known to be much easier to tolerate than TC, and there is minimal hair loss (I'm told).

Meme117

BB I'm so glad it worked out, sucks that crucial medical decisions are made by someone in an insurance office.

Joanna sounds like you made a nice new chemo friend.

Mary I think I'm with you with the weight gain - anyone else?

Katy sorry your feeling so bad, big hugs to you! Glad jack can keep you company.

Congrats E my fingers are crossed!

I'm on the herceptin and perjeta before surgery and it absolutely wreaks havoc on my GI tract. I'm finally feeling almost normal at 10 days post treatment. I'd love to have only 4 treatments but scheduled for 6. Going for ultrasound tomorrow as can't feel lump anymore, maybe they'd cancel the last two treatments???

Italychick

Ninjamary, you go in your do rag! I'm the same way after chemo, clean the whole house, everything. I exhaust everyone around me. But major kudos to you for going to the gym!

I am up 9 pounds too, in spite of all my exercise. Carbs suck, but sometimes they are all I can eat. And my fingers are swollen and rings are tight, and these rings fit me when I was 50 pounds heavier. I hope it goes away once chemo is done

SpecialK

sueh - I did work in health care up until the time of diagnosis, my father in law and brother in law are physicians, mother in law and two sisters in law are nurses, and I lost both my dad and brother to stage IV cancer.  I am a "knowledge is power" person so I have researched extensively, and have helped several friends through cancer diagnoses after mine - two friends with breast cancer that were different than mine, and I am currently helping a friend with stage IV mesothelioma/sarcoma.  I have had a number of complications, as evidenced by my sig line, so have gathered experiences over the last five years regarding breast cancer.  I am also active with a group of ladies locally that came together through this website - we get together every couple of months and learn from each other's experiences.  To answer your question, CMF is an older regimen, a first generation polytherapy - second and third generation combinations have proved to be superior in efficacy - particularly for larger and more aggressive cancers, but CMF has been used successfully for TN, and for smaller and less aggressive cancers, or for patients whose comorbidities make some regimens potentially too damaging.

rleepac

Oy vey...you've all been chatty! Love hearing life stories and what a diverse group of women we are! I don't have the energy to tell my story right now but I will soon.

Had Taxol/Herceptin #3 today. Went fine but my tummy is not happy

The nurse asks about side effects and when I mention the drippy nose she says "oh, you have allergies". WTH? No, I think I know what allergies are and I don't have them...it's a SE duh. She pissed me off and it made me not trust her so I was watching her like a hawk the whole time.

Anyway, now just have an upset tummy and I'm tired.

Tomorrow I have appts with Gyn Onc to discuss ovarian suppression vs oophrectomy and the Anorectal specialist because they think I have an anal fissure. Oh boy...I'll just walk around tomorrow with no pants and take care of my bottom half for a change LoL.

Bekah

Carrie37

SC, I bet it feels so good to make that connection!

wpmoon

I'll catch up later but wanted to say my tumor was 1.3cm. But I'm also triple positive and my HER2 was 100% positive so maybe that's why I'm getting perjeta? I don't know. I didn't ask. I stopped fighting my chemo plan after I tried to talk my way out of it and my MO said no lol.

SC_Coqui

Woke up a little dizzy this morning. I think I'm just going to work from home today. My son has a music show at school today so I'll go to that and chill at home most of the day. I'm not into being dizzy at work. And my stomach isn't very happy right now.

Interesting to see how our regimens can be so different. Now with having herceptin added, Bekah is my chemo twinsie. We have a similar dx as well. Only difference is I won't be getting Perjeta. I guess with being equivocal it's not necessary.

My MO said they're running a study now to see if it's worth giving women with a HER2 equivocal dx herceptin with half the group getting it and the other half not. I hate studies like that. I always feel like the ones not getting the medication get the short stick somehow.

SpecialK

SC - trials are voluntary so anyone enrolling knew they had a 50/50 chance of getting the medication. Also important to note that until very recently those who were equivocal Her2+ did not receive Herceptin at a,and many oncs still don't give it, so the trial recipients can be considered at an advantage

Trvler

Just wanted to give you the update so you don't worry. The CT scan of my lungs came out fine…no clot, or anything. So after 5 minutes of being relieved, the doctor explained why he wanted an MRI the next day. He thought I had either a blood clot in my heart or a tumor in my heart which of course, just about sent me over the edge. They sent me home that evening and I spent the next 24 hours in complete hell. He told me to call in the morning to schedule the MRI as they were closed already. When I called, they refused to do it for a week. I texted him (gotta love young doctors) and he said sit tight and they got me in after he strong-armed them. The a$$hole scheduler was giving me a detailed description of the schedule over the next week, all of which I couldn't give a shi$ about. Anyway, I am extremely claustrophobic so I had to have take Xanax so I needed to...

Trvler

get a driver in a few minutes. Sorry for the second post. For some reason, the more I type on here, it starts going really slow. So the test took about 2 hours. Ugh, but I got through it. My friend met me there to pick me up and the doctor wanted to me to see him after to discuss it. So thank god (and I can't believe I am saying this, it was a blood clot in my heart). AND NOT A TUMOR. I am injecting myself with blood thinners twice a day and I have to go back in a week for another echo. Please if anyone KNOWS anyone who had died from a blood clot to the heart, don't tell me. I am finding it harder and harder to come to this site and read all of this stuff. It is starting to cause me a huge amount of stress. I love you guys and want to know how you are but I just can't stop thinking about the horrible what ifs of all of this nightmare.

Trvler

I am going to try to get caught up on the posts as much as I can but I have a lot of stuff to do after dealing with nothing but my issues for the last 36 hours. Wishing all of you ladies with spa visits love. Also, Katy, I hope you are feeling better. My birds have never come back. I am not taking it personally. They seemed a tad lazy anyway.

Trvler

BB: I am so glad you got your CT approved. I know exactly how you are feeling. You shouldn't have to deal with that crap. TAKE the Xanax. It was the only reason I made in through my whole thing. I usually take .25 to sleep. I took .75 for the MRI and .5 to sleep both nights.

Eileen: Good luck on your job!

I gotta hurry to school. I missed something the other day because my daughter didn't tell me about it and I was so upset between that and all the tests and worry. I am taking a day off of working out to get caught up. Oddly, the doctor said it's still ok to work out with a clot in my heart.

Meme117

Allison big huge hugs to you! Try not to read too much, I'm sure your doctor can hive you some assurances, great that you can text him and he advocates for you. Take it easy today!

ninjamary

Allison,

Good luck. I'm sure the blood thinners will do the trick. Your doctor sounds awesome. Will be thinking about you.

ksusan

If it were an emergency, he'd send you to the ED. Call and ask if it would be better to do thIs, if it would help you feel better. While docs aren't perfect, they do this kind of triage all day.

Carrie37

Thanks for the update Allison! I have been thinking of you. I can't even imagine the stress you are feeling. Hang in there! Lots of positive thoughts and prayers headed your way. HUG

SC_Coqui

SpecialK -- Good point regading that the trials are volunteer. I didn't think of it that way.

I guess my case in being equivicol, my doctor and the pathologist figured that my age and the aggressiveness of the tumor (it wasn't there in October but was there for the surgery in February) made the doctors think that I was good candidate for Herceptin. I guess that my insurance did as well since it was approved. Which is a HUGE relief considering how expensive Herceptin is.

SpecialK

trvler - glad to hear it is a blood clot and not a tumor, but I know you are worried regardless. There are a number of ladies on this site who have had to do thinners and they have done well. Try not to worry - easier said than done, I know.

SC - glad you are getting the H and that your insurance company agreed with your MO that it has value for you, it is an expensive drug, right? My insurance company probably hates me by now between the chemo/Herceptinand my bad surgery habit!

molly1976

Those $12,000 weekly claims for my Taxol/Herceptin kill me every time! I have super great insurance but unfortunately the plan year re-set May 1 so I have to pay my deductible and coinsurance again. My out of pocket limit for the year is only $2000 but I'm sure I have already hit it with my 2 treatments so far this month.

BBwithBC45

Allison - hugs going your way. Good luck with the tummy shots (I'm assuming this is where you have to give them yourself, right? At least that's where I had to do it years ago after I had a blood clot in my calf). Thankfully it's not a tumor.