Starting chemo July 2014
Comments
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Mumford - seems like I'm following you in your SEs. I know you're ahead of me in the chemo, so love that your posting so I know what to expect. Thanks so much.
JoeysMom - your son is sooo handsome! I have two kids so I understand this is all to be there for them.
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Day 13 and other than a little D after I eat dinner, I'm feeling normal! For everyone with the acid issues, that was one of the worst SE's for me. I felt like I couldn't even get a drop of water down because I felt so full and my throat was burning. I was taking extra strength Zantac which did nothing for me so my dr gave me an RX for Protonix. I've been taking it everyday and have no more problems. It took about 2 days for it to work but what a relief!
One other weird thing is that I'm breaking out with pimples around my nose and on my scalp. Has this happened to anyone else? I feel like teenager again instead of a 48 yr old!
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Clock is ticking and I can't sleep! Mumford, I called PS office to ask about that nerve pain drug gabapentin and they said "Oh you don't want to be on that" with no other explanation. Then they wrote me a script for vicodin. So now I'll have to ask my MO tomorrow about it. Thanks for the info!
Oceanbreeze, yes I felt the same way for the ekg. I sure hope we don't have to have them often or I will get cranky!
Puffin, I hope the redness goes away and you feel better. Did you try an Ice pack? I used them a lot after my bmx.
Shirley, I love my hat! Can't wait to see it in person. You are so sweet! Thank you.
Blownaway, your first hat is great. It looks very nice on you.
Raindew, I'm sorry you got an infection in your TE and I hope you heal quickly. I'm always worried about that as they bother me all the time. I told my DH he can call me frankenboobs. That got a laugh out of him. Seriously, any more scars and I will look like a roadmap!
Good night ladies and good luck tomorrow Mainlady! Here goes round 1...
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Raindew - I'm so sorry that you landed in the hospital - and of course you are entitled to whine...!!
Mags - I didn't realize that my immune system is compromised to the point of not being around people. Wow! My MO didn't mention anything about that. They aren't taking labs - they would normally do that tomorrow before my second treatment - I wonder if I should ask to get that to see if my WBC/RBCs are doing OK?
Regarding dropping out of chemo - it really doesn't have much to do with my treatment center faux paus - well maybe..... In my case, with Stage 1 in my center, they don't recommend to do chemo. When I called my old oncologist in the SF Bay Area (hello Bay Area newcomer...!) he said to do it as a back-up plan for hormone therapy. My body didn't do well with it - and pending the big study in the works (TailorX) that I suspect will show that chemo is overkill for Stage 1 - I decided that the potential harm was greater than the potential benefit. The standard of care for BC used to be radical mastectomy for everyone - no matter what. We now know that was overtreatment. The problem was that I didn't understand page 2 in the oncatype report where it showed that the potential benefit of chemo was small (4%) if not at all. I'm not Her+ and highly estrogen driven - so hormone therapy is where the benefit lies. So - now I sit here with no hair (shaved it today) - realizing that I should have done more research before making the chemo decision. I have no regrets about not doing it - and quite frankly, get a little annoyed when people assume that I'm doing everything for my health and someone even insinuated that I was orphaning my children - for goodness sakes! Everything in life is a calculated choice. I would rather spend my time and effort on things that are most important - I know that reducing estrogen is my best line of defense....so I'm losing weight (well - working on it!), exercising, taking DIM, greatly reducing sugar, Vitamin D and following the "Life Over Cancer" regime. And if the TailorX study says that I would have benefited from chemo - well, at least I did one - no regrets. It was truly awful - from heart palpatations to muscle spasms. I knew that my body was caving and when I realized that the return wasn't there - I bailed. It's all about cost-benefit analysis.
For those that there is clear evidence that it is worth it - I'm cheering you on. I know that it's not a walk in the park..... if I knew that it was going to help, I know I would have gotten through it....but glad that I have the choice to bail - and my MO is fine with it and didn't have an opinion either way.
Got my hair shaved today and got some pretty scarves - it's hot here, so when I'm in the car or at home, I go au natural - which feels good (except the stubble...but hopefully that will grow out soon). My hairdresser did the buzz for free and even gave me pretty dangly earrings. Very kind...
A prayer for you Rain - and anyone else that is struggling this week. Onward and upward...
Irish Mom Deb
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After a couple delays, my chemo is scheduled to begin on August 7th. I hope you all don't mind me sticking around on this board. My first fill is scheduled for tomorrow (technically later today). Insomnia strikes again
I'm hoping I won't be terribly sore this time tomorrow. Happy Anniversary Mags!
MomtoIrish - I would have made the same decision to stop chemo too if I were in your shoes. You need to do what's best for you and your decision to stop is completely valid and justified.
Raindew - sending many positive thoughts and prayers your way. I'm hoping you will be in the comfort of your own home soon.
Hoping everyone has a wonderful day with minimal SE.
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Irish Deb, you are doing the right thing! You've done lots of thinking, research, etc. and you are making the decision that's best for you and your family, based on how you reacted to the chemo. Don't let anyone say anything that makes you second guess. First, it's none of their damn business (everyone's an oncologist all of a sudden?); and second, there's something very powerful for your soul (and I have to believe -- your body), when you come to a difficult decision and make peace with it.
WalleGator...you'll be glad to know that I'm beginning to feel better...still some mouth issues, but nothing preventing me from eating. And sleep eludes me (up since 4am), but otherwise doing okay.
I might take in a yoga class this morning. I'm lucky enough to have access to Wellspring (a national cancer resource centre) that has amazing programs, support groups, etc. And they have drop-in yoga! How cool is that? I will confess here that with all the crazy stuff I've taken up (including women's ice hockey), I've NEVER tried yoga. What's wrong with me? Please don't judge me...
Finally, Shirley, a huge THANK YOU for my hat....I can't wait!
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maidentired, wizard, and mumford: I caved in last night and took a Unisom at 12:30 am (after waking up). It worked for me for the first time since beginning chemo. Hope you got back to sleep for a few hours at least.
momtoirish: We all have to do what's best for our families; you don't have to justify your decision to us! Plus, it sounds like a thoughtful decision, based on your best understanding of the facts.
We had a good day at the beach yesterday. DH, though, has been having his own health scares (shortness of breath, tiredness) and he will be going to the emergency room in a bit. Praying he's OK!
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hi mags,
Canu add me..I need all the prayers I can get. I am starting 6 rounds of tch today, July 30th, with herceptin for a year followed by 10 years of hormone pill.
I'm a32 year old mother of 2 little ones and a first grade teacher. Planning on going To work and taking off as needed. Should be interesting. I have a 3 and a 5 year old. The three is going through his horrible 3 stage and driving me batty.
I was dx with Idc, triple positive, no family history. Hoping for as few Se's as possible. Going to a writing workshop in city next week with colleagues and beach vacation week after. Powering through!
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HI slappy, if not too much trouble, can I get a hat too? I'll pm u
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Maidentired - Good Luck today! I couldn't sleep either. But at least, we'll be on our way & know better how our body reacts after this first round! Praying it goes well for you today!
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I've also got a script for a patch for neusea..did anyone else? It's called sancuso 3.1 mg 24 hour patch. Will bring it to first treatment today to wear for next 7 days.
Also for the neulasta shot..does it have to be cclaritan..I have prescip allergy meds, won't it work. Really trying to cut down on cost. Claritan is expensive!
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fallen: I used the generic version of Claritan for the Neulasta shot. I'm not sure what your prescription allergy meds contain, but they may not include the same substance that is supposed to ameliorate the SEs of Neulasta.
Good luck, all you ladies who are getting their first infusions today!
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Good Morning Ladies
) Well it is official, I am shedding like a dog now, I imagine by weekend I will be buzzing it off to avoid having hair everywhere and watching it fall out in clumps... I will be leaving work at 12:30 today to go for my 2nd infusion. I am hopeful that I will not have the runs this time around. I hope everyone is having a good morning and My thoughts and prayers are with everyone always.
Mainlady and maidentiredofwaiting I wish you both good luck as you begin your first insusion today..
CoyoteNV ~ I saw you posted that you had an infection after lumpectomy, I am sorry to hear that, I did as well. I started to run a fever and my breast filled up with fluid so huge that after they drained it once in the surgeons office I went back the next day because it was severely red by the incision and huge and painful from fluid.. The doctor took the steri strip off and my breast erupted like a volcano all over the floor - it was pouring out of me like a garden hose... it was the most embarrassing and horrifying thing to go through. I was mortified although I had no control over it. I had to go back every few days to get the incision cleaned out and packed. This all happened a week after my Mom passed away
They tested the fluid and I had staff infection and was put on levaquin for 14 days. Thank God it cleared and did not fill again... I do however have an air filled seranoma in the surgery area as per my CT scan. Hoping everyone finds a reason to smile today
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Hey everyone, hope you are all doing well or as well as possible.
Quite honestly this dense dose chemo has been kicking my butt! I rarely know what day it is anymore and it seems like I live in a fog... hubby mentioned taking next Tuesday off last night (my next chemo) and I seriously thought I had another week before chemo... dont know where the time has gone...
I feel so disconnected from everything... have not really been online and try reading all the posts and writing replies but by the time I get to the text box I have already forgotten half of what I wanted to say... or I'm just so tired I close out the browser after reading everything and take a nap.
I do have horrible mouth sores this time, have been taking probiotics and was prescribed the magic mouth wash, started gargling the bakingsoda water mix hoping they will go away before next Tuesday because I'm afraid if they dont it will only get worse...
My skin is also so dry and flaky no matter how much lotion I put on...
Well this has ended up being quite a long post, hopefully it makes sense !?!
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Morning ladies.
MomtoIrish: chemo drops your white blood cell count which makes you susceptible to infection till they come back up, depends on how low yours dropped, probably a good idea to just get
a blood count done so you know where you're at, and once you know you're level is OK it's fine to be around people again. I'm going out shopping but am very aware of what I'm touching and who I'm around. And I go around every day and wipe down surfaces I know Lew is touching too, he works with students at the university and who knows what he's bringing home with him.
Wizard: my next chemo is Aug 7 too, praying it goes well for you. I have my crushed Crystal Lite ice ready to chew during the infusion to help avoid mouth sores, worked for my 1st session, my mouth is fine
Fallen: I bought a small bottle of real Claritin even though I take the generic for my allergies, and just took the real pills for about 4 days (day before the neulasta, the day of, and a couple days after). After reading about the epic pain people were having from their shot I didn't want to risk that the original formula might have something a little different in it, and at that time I hadn't talked with anyone who had tried the generic. And I had no significant bone pain, nothing that needed even a Tylenol.
Are you ladies familiar with Segways? Lew and I each have one. I haven't been able to ride mine much this summer, first because of my rotator cuff surgery and I couldn't use that arm to control the steering, and then because of my lumpectomy on that same side. But my arm is strong now, so we're riding them down to the park for a picnic with Lew's telephone retirement group, and we'll make sure we sit by people that are healthy.
Miss eating my homegrown raspberries this summer, that's one food the chemo class said you just can't wash well enough with Veggie Wash to be safe. But my cherry tomatoes are doing great, they wash up easily, and I'm loving them. Time to go fertilize my flower beds, I'm attaching photos.
Hope everyone has a good day.
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Checking in to offer some hope. Completed 1st round on July 15 and the second round yesterday. So far, so good. I take the generic Claritin beginning the day before chemo and for four to five days afterward. No bone pain at all. I've stayed ahead of the nausea with the Emend on days one to three, and supplement at night with Phenergan and Zofran by day (if needed). So far, no mouth sores. I read somewhere that keeping ice chips in your mouth during the Doxyrubicin administration will lessen the chance of getting those, and I'm sticking with it.
I have had some fatigue a few days after the chemo, but take a 45 min to an hour nap when I need it. I've been able to keep up my two-mile a day brisk walks.
This second infusion did cause a bright red sunburn-looking flushing on my chest and neck.
And the hair loss...starting noticing some strands dropping last Saturday, and by Monday, I was losing major handfuls of hair. Time for a mohawk!
I hope my side effects don't get much worse, even though the nurses keep reminding me the effects are cumulative. I'm trying to stay positive and see the sunny side in all of this, but I'm a realist.
Every event (mastectomy, port placement, chemo) caused me anxiety beforehand, but when I got to the other side, I always said to myself, "You did it. You got through this and it wasn't so bad after all." I figure it's all for a good cause--my life.
Drink lots of water, keep exercising when possible, and watch old Saturday Night Live reruns!
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Hello Chaos,
Are you having the same chemo as me, I am also doing dose dense with Adriamycin & Cytoxan every 2 weeks then 12 weeks of taxol. Fortunately I have only had stomach issues with the runs for 4 days after my first infusion. I did feel a little tired but went to work every day except one day when the runs were the worst. I have pretty much felt 100% days 1-4 days 5-9 I had the runs then felt 100% since. I am hoping this time around I do better with the runs and can work everyday. I'm sorry you are having a tough time
how many treatments have you had so far? hoping you get some relief soon ....0 -
FallenMirage....sounds like we have the same diagnosis....and treatment! Where in NJ are you? I'm in Manhattan.
I did one round so far....and so far all good except for some rash/breakout on my forehead. My biggest tip is drink 200oz of water/day the week of chemo. I continue to drink 80-100oz/day. Take Prilosec (omeprazole) daily. Definitely get the Neulasta shot....and take Claritin for 5 days starting the day you get shot. Also they will give you stomach meds for nausea. I didnt get nauseous, but had stomach cramps starting end of day 3...I didnt take my meds till day 4.. From now on I will take on day 3. I only needed mine 2-3 days. I felt fine starting day 6 after chemo.... The rash showed up @ day 9. I hope you have minimal side effects too!!!!
PS- I also take a very good probiotic, @10g of L-Glutamine/day, Omega 3 Oil and B complex - all OK'd by the nutritionist at the hospital.
-Jennifer
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Puffin - the formula for generic Claritin and real are the same its 10mg Loratadine. I took the generic and no bone pain..
I
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thanks Jenliza, since I have the real Claritin and am only doing 3 more rounds I'll just use it up.
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Every time I feel "whiny", as RainDew says, I read about what some of you are going through. It sets me straight real fast!RainDew: You have whining privileges in my opinion.
JoeysMom: That infection experience sounds absolutely horrific! Mine comes with some cautionary advice. Bacteria from my cat's mouth - I was giving him pills by pushing them into his mouth - ended up in my surgery wound. Apparently, I didn't wash my hands diligently enough and touched the drain ball from the surgery and the bacteria climbed the line. The drainage turned ugly and I developed a fever. It was some weird bacteria that will show up in cat and dog bites. It passed with 10 days of treatment.
ChaosRains: I feel so bad for you for the extra tough time you are experiencing. I have wondered how it is decided who receives the dense dose treatments. Did they say anything about changing it if it is too hard on your system?
Tomorrow is my #2. I took dex this morning and will take it at lunch again. Being diabetic, I have to watch what it does to my blood sugar. Last time it sent me out of control (up to 600) and I generally keep a pretty tight ship (around 100-105) with my glucose levels. That is another cautionary message. If you suspect that you have any blood sugar issues, pay attention to changes in how you feel when you take the pre/post-chemo steroids.
I'm just full of advice today. Hope you think it's worthy!
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hi jennliza, thanks for the info. I live in branchburgg, near bridge water, central jersey...used to be Bergen county though.
What stomach meds did u have for cramps?
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FallenMirage - its the same meds they give for nausea/vomiting. That is why I didnt take them till the 4th day....because I was like I'm not nauseous.....but they work for stomach cramping. The 1st they tell you to take is Zofran (i forgot the medical term) every 8 hours....then there is a back up to take every 6 hours. I definitely needed both on day #4. Day 5 I just needed Zofran in the morning. Day 6 - nothing.
I also needed Tylenol or Aleve for body aches/headache....needed days 3-5 and occasionally for a headache thereafter. By day 6 I felt back to being me.... I went to work day 2 (and will going day 3 as well going forward -moved my chemo day to Wed).
The steroids keep you going till mid- end of day 3...for me that is when I started to feel the chemo. And from now on that will be Fri....have to leave work early to get the neulasta shot. Day 4 was the worst - will be a Sat. By end of Day 5, I felt 90% back to being me (Sun). Work on Mon (day #6).
Again - we are all different....but that is how my 1st treatment went ... I truly think drinking all the water really helped to flush the poison out.
Good Luck!!!
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Coyote: I know why I'm getting dense dose AC -- aggressive, large tumor that the surgeon wants to shrink before he operates. I'm not sure about the other ladies here.
Cinchacha: I'm not even going to bother with the Mohawk. As soon as I start to shed, it's time to go bald. I just hope my wig isn't too uncomfortable.
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Joeysmommy, yes we are getting the same treatments, I have 7 of the AC to get thru, I have had 2 so far and will have my 3rd next Tuesday. I can't even imagine working with my side effects, you give me hope that maybe they will get better! I think my side effects might be so horrible because in addition to breast cancer, I also have lupus.
Puffin, your gardens look lovely!
Coyote, I have started to feel like all I do is complain, but maybe thats because I only do so online? I try to keep things as normal as possible and minimize the side effects to hubby and my children because they get too stressed out worrying. I have to have dense dose because of the size of tumor and how quickly it grows, I am going to have the lifetime limits of both the Adriamyacin and cytotoxan as well as the Taxol which is kind of scary when thinking about the possibility of recurrence, so I simply refuse to think about it.
I am hoping that as with last time, I start feeling normal soon... last time I had the three days before my next treatment that I felt almost normal...
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Pink Ninja - I had the same thing pimples from chest, over face and head... MONTH gave me prescription for Minocycline for acne says either the steroids or Docetaxol caused me to have acne break out so will stay on this through treatment.
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Hi ladies i had to shave yesterday i had an episode with my daughter and was not nice. She was playing with me and grab my hair and it was lots of hair in her hand... mommy just laugh and say ooo no this medicine that mommy is taken is so silly makes the hair fall .... and than I shaved after she went to bed !,,
Chaos you should try biotin supplement 500 mg and also cetaphil you van buy the soup and the lotion is wonderful I have eczema so I know about dry skin
Puffin your garden is beautiful!
Hope all get well to the SEs these time
XO
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Hello pink warriors! Still dealing with intestinal issues, day 9 for me now. You know, I have chronic pain issues etc., so I deal with pain every day. I can take just about anything but gut pain. It just plain lays me out.
Irish mom, I wanted to add my additional $0.02 to what you said above. If I'd been looking at a 4% difference in prognosis rather than a 15% difference, there's no way I'd have subjected my body to this tx. You've done the right thing, and I want you to know that I really appreciate your decisiveness and I'm glad you've stuck with us because you are an important voice in this thread.
Puffin, your gardens are delicious. As I've lost the ability to move as I used to, gardening is what I miss most. I've never not had a garden – in fact, I told someone, I don't know how to NOT garden. It's hard. I've always wanted to try a Segway, don't know if that will very happen though.
To all of you who are starting in August, you are more than welcome to hang around – I'm still in the June thread because I didn't have a start date and was sure it would be June, and missed it by one day. The more preparation you have, the fewer problems you'll encounter.
Well, I told DH that I don't think I'll be up to going out for our anniversary dinner until at least the weekend. I have this nightmare scenario in my head where Big D attacks mid-steak and I'm unable to finish a meal. After 27 years of marriage, if it's not a major milestone, we just spend time together and it's all good. No one (but us) thought it would last this long, since we'd only known each other for 2 months when we got married. And frankly, if it weren't for God, we'd have been on the rocks the second year. DH is a toastmaster, and around our 18th year he gave a speech for a contest and called it "Sixteen Wonderful Years". It was pretty funny, and oh so true.
Fallenmirage, we welcome you to our wonderful group. I do pray for you, and there are many groups of wonderful prayer warriors all over my life, who are praying daily for each and all of you. I believe God has a reason for each trial, and sometimes it's just to bring us to our senses and remind us what is really important in life – I call it God's 2 x 4.
I will close by adding some of my own artwork (did you know I was a graphic artist for 35 years?) and a poem that has great meaning for me.
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I mailed out hats today!
ChaosRains, JenKay, Ladyb, Mumford, Maidentiredofwaiting, WalleGator, and Wizard50, your hats are on the way!
Shirley
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Wow. So nice to check in today (again) and find such continued inspiration...Puffin's garden, Mags's artwork, everyone's great advice...
I did my first yoga this morning. What a humbling, and wonderful, experience. I fancy myself a bit of an athlete (which is complete rubbish, since my activity these days amounts to long walks). Well didn't I feel stupid when my hips cramped up sitting cross-legged, my hamstrings mocked me throughout, the back spasms were a not-so-gentle reminder of how much tension I have been holding -- all the while thinking I've got this covered. Ha! I can't wait for the next class.
Hey girls, this BC has me wandering around, looking for something to do with my days (I'm a high-school teacher, so off through the summer, at minimum). I've always wanted to write and inspire others with my words, so I started a little blog. You might recognize some of yourselves in one of my posts...
Check it out if you feel like it. You can access the blog directly at blog.normannemoves.ca
Anything you want to read about? Let me know and I'll try to make you laugh a bit...
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