Starting chemo February 2018
Comments
-
Hello ladies..
This is my first post. I have found strength in reading everyone's journey. I am terrified of chemo+radation. My Onc has recommended 4 cycles of Adriamycin + C every other week..followed by Taxol same schedule as the first. Total 4 months and then 6 weeks radation. Followed by Hormone Blocking Therapy. .I don't know.. but part of me says run and the logical side says you need to do this! I am in Tulsa and the Dr's here have been good. My Ki67 is 20% ..Dr. Says if I don't do any tx recurrence is 60%..this treatment lowers my recurrence to 30%..?? So, 40% chance I do nothing..sounding good..but I dont want fear to rule .Any advice? Scared and trying not to run! Thank you ladies..sorry to sound like a coward..just my head is spinning..scheduled for PET scan on 4/2 and Port Cath on 4/3..they still have not done ECHO to see if my heart can take Adriamycin. .No history of heart trouble. .55 yrs.young. Any advice is welcome.God bless you all! Hugs
0 -
Hello Spunhoney, sad to welcome you to our club. I understand perfectly your feeling. I wanted to do nothing when i've learned about the bad news. I have needle phobia and chemo is full of needles. I was afraid of side effects for chemo and radiation. I thought that my kids were old enough to live without their mom and fake husband is a good father. However I woke up one day and saw all the things that I would miss if I don't get treated so I decided to go ahead with treatment. I don't have a port. Instead I have kind of a PICC but it is on my torso above my right breast. It requires some care and cannot be wet but no needle involved. For the AC treatment you will feel shit 4 times one week each time and second part of second week you should feel some relieve. I had the choice between 4 times taxol dd or 12 times each week and I opted for the second option because I read there are less SEs or they are milder but I don't know. After that I will need surgery and radiation. I really don't want to get radiation.
So all in all, i think that 55 years old is too early to die and it will be painful. My sister, who is a doctor, told me that people who did nothing or tried alternative treatment come 6 month later to the palliative care center of the hospital where she works regretting their decision because they were in so much pain. I encourage you to take the same approach as mine. Treat it once and see how it works!
Send lots of hugging and strength your way. So many others have done what we are doing now. It is doable.
Courage
0 -
Jo6359 - the story with the runaway wig is hysterical, had me laughing out loud. Where in FL did this comical episode occur? I was in Miami 3 years.
spunhoney - i am on same regimen as you: 4AC+4T. I'm done with AC and start the T next week. Yes, as Lolette said you will feel crappy after the AC for the first 3-5 days then day 5 or so feel normal again till next tx. You can manage it with nausea meds (ask you MO), claritin (if you the neulasta shot to boost your immune system) AND drink LOTS of water. That way you know you did 100% of what was available to you to kick the C in the butt. That's my take on it. You can do it!
ladies - is the Taxol less side affects than the AC? What are you doing/taking for the neuropathy?
Wish you all a peaceful weekend!
0 -
even i finished my 3rounds of FAC .. next round onwards i have docetaxol ..
Even i have same doubt if its got less side effects and what are to be expected with docetaxol ?
I had severe vomiting with fac first 2 rounds even after basic nausea meds.. now my 3rd round was just altered taste and sleep mode on ..since i took extra tabs for vomiting ..
Welcome to the group spunhoney..
0 -
Butterflylilly-It happened on Key Biscayne Rickenbacker Causeway. I live about a half a mile from the bridge on the Miami side. So I generally fast walk to the bridge and then I will either run or walk the bridge . I walked it earlier today with a tight beanie on my head. No more wigs on the causeway. Thinking about it still makes me smile. It was funny. We go through so much with cancer. I don't want to ever lose my ability to laugh at the little stuff. Have a great weekend. I enjoy reading your posts.
0 -
Spunhoney - if you make your diagnosis public in your sig line we could offer more detailed info.
Fwiw, I was determined to do everything possible to prevent recurrence. Treating it initially is one thing - but this stupid cancer likes to come back. It's one thing if it's a localized recurrence but if it metastasizes, well, there's still no cure for that
For my stats, if I don't do chemo/rads/hormones my recurrence rate is estimated at 20%. That's 1 in 5 women!
If I do all 3, it brings it down to almost 1 in 10. I want to be around 30-40+ years so reducing risk of recurrence is pretty much my big focus. After the surgeon cuts everything they can see, the rest is all dependent on chemo/rads/hormones..... and lifestyle.Vigorous regular exercise ( can reduce risk of recurrence by 40%. http://www.cmaj.ca/content/189/7/E268#sec-12
Chemo hasn't been fun, it's thrown my whole family into a different rhythm and screwed up some schedules and plans, but you know what, it's doable. I don't care about my hair, my side effects have all been manageable and I feel lucky to have the opportunity to access all these treatments that will hopefully mean many more years of having fun with my family, my dogs & pursuing my dreams.
You can do it & we'll all cheer you on
0 -
jo6359- rickenbacker of course! One of the most scenic places in Miami. Stamp of approval for most appropriate place for a wig fly by! I used to take pooch to Bill Baggs and the drive is just beautiful
My wig has stayed in place so far mostly because NY is still so cold i wear a hat everywhere.
Hugs❤
0 -
Hi all, hope everyone had a good holiday weekend, I'm still fighting the D but did get to go out for a few hours to see hubby's band play sat night. Cooked Easter between bathroom visits with the D, ugh, lol. Welcome Spun honey, I think most of us wanted to run on first diagnosis, I still want to run some days but at 60 I wasnt ready to leave this life so I'm here fighting. You can do this too, no one here will say it's easy but I think we'd all say it's do able. Lean on us for support, this place has been a real blessing for knowledge and support.
0 -
Hi everyone, my steroid crash is upon me but not terrible yet. I managed a couple walks and to do some ironing yesterday.
for those of us on Neulasta, I found this chart showing the days your neutrophils crash and how they recover.
The solid black dots are the concentration of neulasta and the open white dots graph is the neutrophil count. Looks like days 3-7 are really the big danger zone for infections, and by day 8 or 9 they're hopefully bouncing back up.
https://www.medicines.org.uk/emc/product/6770#PHAR...I'm printing it out to post at home & remind everyone to go crazy with the handwashing & use the lysol wipes on all surfaces during that period...
0 -
Great chart Moth, thank you
0 -
Spunhoney, I think most of us were scared and a little freaked about chemo and radiation...so, we definitely hear you! But do you can do it! There will be ups and downs, but we get through them...one day...one infusion...at a time. As many have said as well, it's more tolerable than it used to be. They arm us well with anti nausea meds ahead of time and afterwards as well.
jo6359...thanks for a good laugh!! Finding humor in our situation is such a relief! I have the tiniest, wispiest strands of hair left on my head...I was looking in the mirror the other day with my 11 year old son within earshot and couldn't help blurting out that I looked like Master Yoda from Star Wars...I now joke around with him from time to time by telling him..."may the force be with you!"
Moth...thanks for the chart! Funny how days 3-7 are my worst after AC...seems like I start to feel better when neutrophils recover.
Debsmisto...sorry to hear about the continuing big D. I don't imagine the BRAT diet helps at all?
Gearing up for round 3 of AC infusion on Wednesday. Looking forward to knocking one more infusion off the list...not looking forward to the 3-4 days of nausea. I'm getting more ondansetron this time around though...we shall see how that goes.
Take good care ladies!
0 -
MomofTwo- Master Yoda from Star Wars is funny. May the force be with you. LOL
ButterflyLilly- I bet your pooch enjoyed the ride. I go there for exercise and reflection.
0 -
spunhoney-Welcome, sorry you're here. Are you from Tulsa or are you going to CTCA up there?
jo-sorry about your wig episode but it gave me a laugh. I wore mine for the first time this weekend to a concert. The second I got back in the car I ripped that sucker off. The dorag felt like pajamas for my head after that itchy nonsense.
I started taxol today. They had trouble drawing blood out of the port again, it's just being finicky but they finally managed and I didn't have issues during the actual infusion. Unfortunately that meant that they had to do multiple flushes with the stupid saline which made me dry heave.
Labs showed I'm anemic but not enough to need a transfusion quite yet. I'm a bit worried about this since I wasn't expecting it and haven't had a chance to research much yet. The only anemia I know anything about is the low iron kind, but she said it was not from that. Explains why I've been so freaking tired though.
During the infusion they wrapped cold packs to my feet and gave me a tub of ice to stick my hands in. OH LAWD I hate the cold!! It hurt so bad. I do not do cold. I remember from freshman psych classes that they used ice baths in experiments to test pain tolerance. I cried. I was a complete mess today between the saline causing gagging, the ice pain, and all around being weepy this week. I'm a week late for my period so I guess I have chemopause now too but still got the emotional outbursts like usual.
My treatment center has a big bell on the wall by the door for people to ring after their last treatment (kinda like Long John Silver's if you have those) there is a plaque underneath it that says something to the effect of last treatment moving on etc. For the first time I got to hear someone ring it on their way out today and of course that made me cry too, but it also made my husband tear up so I can tell this is starting to wear on him too. Stupid cancer
0 -
cbok-You have the worst luck with your port. I feel so sorry for you. You have been through so much. I agree with you when it comes to the cold. I am a big baby. I haven't started icing my hands and feet because I hate the cold. But I have noticed a couple of my toenails are starting to look raggedy. Is the icing helping?
0 -
My port is like an old TV set you have to whack on the side every so often. It still works if you know how to hit it just right. I’d rather do that than have to get it out and replaced like Amburt. She’s the onethat really had issues.
Not sure on the icing. Time will tell. I had some very very minor pins and needles in one hand tonight. Doc said taxol causes some neuropathy in 80% of patients but only permanemt in 10%. I was not a fan of the ice tub so I took it upon myself to buy some cryo mitts and booties from amazon. Hopefully more tolerable. I made the mistake of looking up what taxol can do to nails and that is motivation to keep doing it.
0 -
Aanoliver- I have the same treatment and was happy to read you finished FAC. You did it.
Wishing everyone the best.
0 -
insideout2- really am so glad it got over, really it was such a horrible one for me..now i hope taxol dont do the same for me ..
since u r the only one i found with fac here .. i think about u .. how the SE treating? Wishing all of us get over with this just with a blink of an ey
0 -
CBOK - other than the neuropathy, did you experience any other side effects on Taxol? How is it different from the AC in terms of how you felt overall after treatment? My first Taxol treatment is this Friday. I'll look into the cryo mits and booties, thank you for the tip!
0 -
we are in Tulsa and my wife is doing the same chemo treatments as you currently are scheduled to take. We are into our 3rd red devil treatment and since after the first treatment she has had a cough that will not go away. Nothing she has taking has stopped her cough, she is at this moment doing a CT scan at Oklahoma cancer specialist since her lungs appear to be clear. Hopefully they can allow her to get some rest. My wife is a triple neg breast cancer patient and is currently doing the breast reconstruction at the same time with expanders. after your rounds of chemo take Claritin for bone pain this has helped her out with foot pain and bone pain.
Her taste buds are not working and they only thing she can eat that has any taste is Chick-fi-la chicken noodle soup, chocolate shakes and ice cream sandwiches.
good luck and hope all goes well
0 -
hi rlindsey41, welcome to the group. I hope your dw's cough gets diagnosed and treated. Glad the lungs are clear - always so nerve wracking when symptoms appear.
Keep checking in & best wishes to you!0 -
In past cycles Monday was my worst day for the post steroid shakes and weakness so I'm hoping it's the same this round and that each day will be better now. I'm feeling good this morning. Yesterday I needed a nap & a dose of metoclopramide! The meds were probably overkill but I felt just a bit queasy and I remember everyone always saying take them at the first notice so I did. Anyway, it worked. I ate, napped, ate some more and no more queasiness. Managed 2 walks yesterday - slow but steady and each time I feel bad for the first 10 mins and then I start to feel so much better.
Raining here today but I will be going for a walk in a couple hours. Keep keeping on, my friends!0 -
Butterflylilly- So far taxol has been much easier than AC. I'm completely zapped energy wise but I'm sure that's the anemia. Otherwise I feel just fine. I haven't had any neuropathy at all today so hopefully it's just a little bit day of and a sign the ice works (even if it sucks doing it).
0 -
hey all- 3rd TC down. Kicked my ass on days 3 and 4 , seriously just could manage shuffling when walking to the bathroom. The freaking steroids or just breast cancer who knows if making me eat all sorts of bad foods even with a queasy stomach.. I just keep gaining weight😏 . Now I have this awesome eye twitch to both eyes this time around, so annoying. My dr started me on gabapentin at night for the hot flashes, so far no changes, I'll let ya all know if it's a miracle worker! I also tried cannabis cbd btw, I vaped it..and well it didn't do anything for me.. kinda gave me a headache! Oh well, was hoping it would be a cure all!! Thinking of you all xo
0 -
jo6359
your wig story made me laugh so hard.
Spunhoney welcome to the club no one really ever wants to join however you will find so much hope and support here.
debmisto sorry that you are still suffering the big D for me the nausea is the worst SE and lasts between 7 and 10 days.
CBOK thank you so much for taking the time to let us know how the taxol is going for you so many of us are doing the same routine just a bit behind you. We all know that the SEs can be different for each us but having some one share how they are doing makes it easier. The unknown is so hard. May they get your anemia under control quickly the fatigue from anemia is awful and we get enough of that issue from chemo it's self so you must feel like your getting a double whammy it that area.
Moth that chart is nice to have.
Mom of two your child will remember how you kept your sense of humor which will make the memory of this time easier for them when they are older. It does not seem to matter the age of our children they suffer with us as we go through this process.
Friday will be last of my four AC infusion they will have to use the PICC line again as I am not scheduled for my third port until the 10th. I hate, hate, hate this darn picc line it will not stay in place and the lines catch on my clothing and my coats and jackets. They give you this netting stuff to hold the lines in place but it wears out in just a day or so then the lines want to flop around. I finally found a long sleeved shirt that I no longer really wear with a snug sleeve, and cut a chunk of the sleeve out and pulled it over the lines to hold them in place it slips some but not as badly as the netting junk. I hope the new port ( they are putting in a completely different type ) works so I can very soon get rid of the picc line.
0 -
Moth that chart was really helpful. I quarantine myself during the low days, but could never really figure out how many days I needed to do that. This tells me I could be cautious but safe to head out a little earlier than I thought- when I’m feeling good again I get cabin fever very quickly!
Welcome to the group spunhoney and rlindsey, and I hope you find all the support you need on your journeys to health.
Cbok I hope those red blood cells climb quickly and take care of that anemia. They have figured out how to help our bodies make white blood cells, now I think these scientists need to get busy working on the reds for us!
Jo I thought your story about your wig was so funny, I’m so glad you shared that with us. Not only do I admire your sense of humor, but I’m super impressed that you went running- on a bridge!- and that motivated me to excercise. Nothing crazy ladies, but I am walking more and riding my exercise bike again so there’s that.
And exercise was needed, because I can totally relate to jlove in that I’m eating ALL the bad foods right now. When I’m feeling ill I excuse myself because I have to eat something that sounds good. Insert bagels, ramen noodles, and 10,000 crackers a day in my mouth. When I’m feeling better all the food tastes good again (and stays down, lol) and I overindulge in everything I want. I’m up the 5 pounds I lost the last round. My family thinks that’s good, but I always had a little extra fluff so I was secretly overjoyed when I lost weight. Well that didn’t last long.
To all those getting treatment this week I hope the side effects go easy on you. To those switching over to a new treatment I hope it’s better than expected! I’m not up for my 3rd TCHP until next Thursday, so this is my GOOD week, and like all of us on this site I appreciate my times of good health and I am going to make the most of it.
0 -
Thanks CBOK - hope the anemia is going away and you're starting to feel better!
0 -
i am so fed up. I want to stop chemo right away and remove my breast, my nodes and basta.
0 -
hi all,
Hope you are all doing well today. Anyone have a good suggestion for improving anemia? Is diet actually effective? I'm on day 7 of treatment and pretty ex
0 -
Hi Walden, I'd focus on whole grains, nuts & seeds, legumes & leafy greens (I'm vegan so I stick to plant based sources).
Maybe ask your MO about taking a multivitamin? I was taking one & some other supplements before I started chemo so I had them all cleared before I started. Folate, B12, and iron would all be important but you need to ask before starting them.
Lolotte - sorry you're having a rough time. You know this already, but surgery wouldn't get you out of chemo. It sucks though. I hear you.0 -
Lolotte-scream, punch a couch pillow, regroup. It's all a horrible trial by fire.
Walden- Treating anemia depends on what caused it. Foods rich in iron/B12/folate enable the red cells to function correctly so that's a good place to start. In my case it's unlikely to be dietary but I still hit the grocery store for spinach greens and nuts yesterday. It's probably either malabsorbtion of b12 due to chemo damage to gut lining (in which case eating more won't help anyway) or chemo damage to bone marrow which screws up production of red blood cells. They do have some medicine that helps your marrow produce more red blood cells but from what I've read the potential side effects are scary so it remains as a last resort kind of thing. I was told specifically to stop taking my multivitamin when I started chemo but I think the reason is the antioxidants in them which can reduce the effectiveness. It all depends on what is going on individually though.
I have had pins and needles in my hands today on and off. But even with that and the fatigue I still feel so much better now that I'm done with AC. I don't have that yucky poisoned feeling anymore.
0
