Starting chemo July 2014
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I still have eyebrows, though thinner, and also have the male pattern baldness with just a strip in the back of short stubble. Am very surprised though that my fingernails are still growing, had to file them down again this morning.
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Pinkninja mentioned Bentyl, I have a friend with Crohn's disease and when I started having the horrible cramping she suggested that. Doc prescribed it and I have been taking it regularly, 3x a day, not as needed. I'm going to ask to stay on it for the duration. And I also take rx lomotil for the D. Only had to take it once or twice this go round. It's just easier to take the Bentyl every 8 hours, I could actually feel the cramping start an hour or so before time to take it, but it never got really bad (you know, sit on the toilet screaming and hoping no one heard).
Mumford, I was ready to quit on day 20. DH let me know, in no uncertain terms, that that was not an option. He lost his mom to cancer, and as much as he hates that I am going through this, he is not ready to lose me. So I do it for him.
JoeysMommy, you are beautiful with or without hair, and you truly are fighting like a girl.
I hate when people try to compliment or be supportive by saying "oh you are so strong!" My answer is, not strong just doing what I have to do. Because I look at you ladies in this thread, some of you doing this a second time, some of you with jobs, and young children, even pregnant, and I know that you are the strong ones, because you have no choice but to find strength wherever you can. Wish I could give you all a big long gentle hug. You have no idea how much I admire you.
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Mumford, I have not thought about quitting chemo. I think that it's because my SEs haven't been too bad and because my cancer is supposed to be pretty aggressive.
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Knmtwins- I've only taken Immodium for the nuclear D and I try to wait it out because sometimes, it's only about 4 or 5 times. I know that may sound crazy but I don't want to end up with the big C. I used to have IBS really bad years ago and I know I made it worse by taking so much Immodium. I would get so cramped up I would almost go to the ER for the pain. 😱
I'm almost bald with tiny spots of stubble and still have my eyebrows, although they are thinning. I'm praying for my eyelashes to stay as well and I haven't had any fingernail or toenail issues. Not sure if that comes later, hope not!!!
I'm so excited to get tomorrow's infusion done cause I'll be halfway done!! I have an ultrasound in 2 weeks then meet with my breast specialist to figure out what type of surgery I need. I'm hoping for a lumpectomy cause I don't want to go thru a few more surgeries with a mastectomy but I might have to.
I am definitely taking an Ativan to help me relax and sleep tonight. The steroids make my heart palpitate and I hate that feeling 😝
I not been wearing my wigs due to the heat and the infection on my scalp I had but I wear bandanas. I buy them from Michaels craft store or AC Moore for $2 and I have every color, even cute ones with patterns.
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Mumford,
I have certainly thought of quitting. I even thought about not starting at all. My MO asks every week if I want to keep going. He is a long story that I will tell in the Aug. thread. He has been a problem for me since the beginning. The thought of going through changing doctors is daunting, though. I made it through TCH this morning. The problem is I feel best on infusion days. All the bad stuff happens after. Just waiting for it is torture. Right now I'm sticking with it, maybe just to drive this MO crazy. Sometimes I think he wants me to quit. I don't think I want to give him the satisfaction. So there.
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joeysmommy - I have gained over 5 lbs since starting TCH infusions. Someone told me to expect 8-10 lbs weight gain.
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Jaycee, I really like your approach...if you're not feeling the love from the doc, it's kinda funny to think you're driving him crazy. I would say, though, that this process is one that demands really good relationships, especially from your MO. I want to believe mine is really in my corner (and I do...), just so he can fix me. I have this little theory that MO's like to 'break up' with patients once they've cured them...like their little score card. Wouldn't that be cool? To be able to say you've saved yet another life...?
All to say, maybe you might want to ask to see someone with whom you have a better rapport...it's too important to wonder.
I also get what it's like to wait for the SE's to hit. I had my roughest time yet over the past weekend, but I'm feeling a lot better today. And tomorrow will be better still...
I am lucky in that I have just one more round to go (I'm praying for on-schedule on the 11th). Can't wait to ring the bell!!!!!!!
Pink, I hope you get the best possible news with your ultrasound. But I have to say, looking back, surgery is a breeze compared to chemo. You know what to expect, when, and for how long.
Mags, thank you for the perspective. This decision to have chemo was for a long-term outcome (for myself, and those I love). Quitting is not an option (but I will admit I have fantasized about this being over). It will be good to know, next time, that when I start to feel better after the days in the pit, that the only way forward is up and up and up. I have to remember how lucky I am to be able to treat this beast.
Wouldn't it be fun if we could all go out to dinner together...or even better, spend a weekend at a big chalet or cottage? Preferably one with lots of toilets...
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Mumford
- Hand raised after first TCHP, but, I have 2 ten year olds and a 7 year old,
so I had to push that thought aside. I was lucky, 2nd wasn't as bad, but,
still freaking out about tomorrow, my 3rd. I don't know why, because
chemo day isn't bad, it is the days after...Jaycee - heck yea, don't quit,
piss him off. I got rid of my 1st MO, I had lots of nasty names for him,
but not appropriate for a thread. It was before starting though, but we
are basically following treatment guidelines prescribed by NCCN 2014
guidelines, although there may have been some changes at the May Conference, so
most other MO would do the same. Ask
around to see if anyone likes theirs at your next treatment. Maybe there is someone else at the center you
are using. My new MO gives you his cell
number and says call 24/7. Don’t call
the nurses as he wants to know EVERYTHING.
He called me on day 2 to check on me (smart, called before the
yucks). The jerk MO had a really nice
nurse and you were to call her for everything but only emergency on call for
after hours. I think it would have been
OK because of her, but … I won’t go into
all my issues with him, but ran into a dad from my son’s cub scouts and he
said, “Oh him, yea, I don’t see him anymore’, made me feel much better as I was
worried it was me. Just make sure whoever
is ‘driving the train’ for the entire ride you trust. I feel that way about my second opinion
oncologist, too bad she is too far for me with little kids.Found
my Seal a Meal, am going to make ice packs tonight (alcohol and water ones)
tonight for feet and hands. That is for
during T right??? My cuticles are
getting a little lose and I’m freaking out.
I have a nail loss phobia, so that as a possible side effect isn’t
helping.Bentyl – should I ask my MO for it? I’m not sure I want to take it
constantly. Can I take with with lomotil
that horrible night?0 -
Joeysmommy - I've gained a couple of pounds on AC, mostly because I
haven't been able to shake the queasiness for a good week after infusion
and eating is the only thing that makes my stomach feel better. I feel like I've been lucky though since I haven't had a lot of other crummy SEs besides queasiness, a runny nose and red eyes, and fatigue. I think
we're on the same AC schedule. Tomorrow is my last AC too - I'm so excited.
I hope Taxol is much easier as I'm getting it weekly, but my nurse said said some people gain on Taxol. I'm hoping I feel good enough on Taxol to get back to a regular exercise schedule - that should help a bit with any weight gain.0 -
I say for a chalet retreat! That would be awesome! My hubby and I love to go on cruises and we try to take 1-2 per year. I was online last night looking at them and I am hoping that by January/February , I'll feel amazing
I am starting to worry about the nail side effect as I am also on TCHP. The thought of my nails lifting freaks me out
The Bentyl is the best cramping rx and I am pretty sure you can take it with the lomitil. I only took it a few times after the 2nd infusion, not all the time like Mags. I've been lucky to have almost no cramping, except when the nuclear D hits. bleh...
I have definitely gained several pounds and I'm trying not to stress. I generally eat very well, drink green smoothies and juice alot but since starting chemo, all that stuff tastes gross to me and I can't drink the juices or smoothies when I have the horrible heartburn. The way I look at, I'm eating anything that tastes good and I'm trying to eat more protein but it's hard.
Getting ready to go take some calming meds to relax me since the steroids are giving me lots of energy
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Pink,
What dose is the Bentyl you take? The ones I have are 10 mg. When do you start taking it? Only when the pain hits? When I had the cramps and pain with the first infusion, anything going into my stomach caused it, even water. I want to get on top of it before it gets bad this time. Mags, when do you start taking it? I plan on the three a day thing. The Mags' plan. I'm optimistic, even though MO thinks I'm not.
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CoyoteNM,
I got my Bracelet!! I love it! Will post photo when I get my desktop feeling better.
Thanks!
Shirley
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Jaycee, I have 20 mg Bentyl and I only took them when I started to get cramps. The bottle says take every 6 hours as needed. If you have lots of cramping, just take it all the time like Mags. I think I took it for like 3 or 4 days straight after my first infusion.
Soapy, I know that you are making chemo caps and I didn't know if anyone else would like one as I also make them.
Here are a few pics, let me know if anyone wants one. I also do baby afghans and lots of other stuff. Sorry the pics are so big, I need to figure out how to make hem smaller or else when I post my bald pic soon it may scare you, lol
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Munford um laughing so hard (with lots of toilets...) that was good kkkkk
I'm a yes for the retreat would be wonderful !!!
About quitting it's not an option for me ..,,
As Mags said with Litle children we think who would do my job as mom???
Mags you are pretty brave too and very generous because we also are doing only what we must 😬
Coyote NV I got my bracelet and I love love love it is so beautiful more than the pics ! I'm using it and my mom and my friends also think is beautiful ! Thank you sincerely ! It's a beautiful gesture and I very much appreciate!
Joeys mommy , you look beautiful and we will do it for them but also for us since our mission is to raise them but, also to learn and become better persons in our life's enjoy what we love and dedicate a Litle time to ourselves too. These unfortunate time shall pass !!
Very tired I had 3 hrs sleep last nite from decadron😭😭😭😭😑
XO
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Pinkninja I love the caps I would like to have any one
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I eat very carefully and have stayed between 110-120 lbs since I was 17...only got above 120 when my dad died. I am still mostly eating well, but still gaining weight. I started chemo @115 and now I weigh 121!! But I do have my period....has anyone else gotten their periods while on chemo? I have chemo # 3 trmrw. Don't know if getting it is bad or good
My eyebrows are thinning more than my eyelashes. I have to pencil in the bald spots!
Knmtwins - I don't know anyone for surrogacy. And yes we are considering adoption. I have 2 first cousins that are adopted. I love them very much and are amazing kids! I have a friend who adopted 3 kids...I plan to get her attorney's info....as well as info on my aunts attorney. It would be nice to have a baby late next yr...my wedding is planned for 7/11/2015.
Not sure who considered giving up on chemo - I haven't considered not doing chemo.....since I have triple positive aggressive cancer. However, I am considering doing 5 treatments instead of 6. I have 6mm of IDC...so less than the 1cm where they say as the tumor approaches 1 cm there is a greater chance cells getting into the blood stream. I just think there is a balancing act between the chemo you need and the harm it does to our bodies/health. I am not deciding now.
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I mommymel, give me your mailing address and I'll mail it to you 😊 it's almost midnight and I'm still awake 😞
I need too try to at least get some sleep
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As to weight, I loose 10 lbs the bad days (you know that is water) and then spend 2 days drinking diluted gateraid and the next 2 weeks forcing high caloric foods on myself to get it back. I find it hard to eat much and drink all the water to flush the poisen out. Your stomach is only so big, but withthe exception of the bad days, I always get at least 72 oz in. I'm overweight, but I remember my 2nd opinion MO saying, don't get a twinkle in your eye that you might lose weight, your job is to get it back for the next cycle. This is chemo, you will need that weight to stay healthy during it. I loved her, very straightforward.
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A little update about me. I've been a bit quiet on the boards.
I started Adriamycin/Cytoxan in July, with the Neulasta shot the day after. I am finished with those! Whoo hoo!
I start Taxol in September, every Monday for three months.
I am praying for no complications as I have been a bit
blessedaggravated with just mouth sores so far, no nausea and I have the mouth issues under control thanks to MU Gard and Lidocaine Viscous solution. It helps. My tongue is still weird and even mashed potatoes can bother it. Hate it but I deal with it.I was losing may hair back in July, my 2nd treatment, I shaved my head and just wear bandanas though I ordered a wig,through my cancer society, but then being here in Florida and our temps topping out with over 100 with the heat index, I am not going to wear that for some time!!
Sending prayers to the newbies and hugs to everyone here on the forum ! I will do my best to be in touch on here more often.
Take care everyone!
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Thanks for the tip about Bentyl. I will have to see about getting a rx for that too. I've never felt cramping like that before and I hope never to again. Finally feeling better today. I appreciate all the tips, you girls post. Here's to minimal se's today!
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Jennliza -- I am still getting my periods! Aargh. I am 47! And, of course my last period showed up last Friday, when I was still feeling rocky from AC #3. It was like an insult, added to injury.
AJ62 -- Glad to hear from you! I will also be starting Taxol in September, but later in the month. You'll have to let us know how that goes for you.
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getting ready to go get # 3 then I'll be halfway done!!!!
Last time I went with the pink stripper wig, today the blue one!
Have a great day, I know several of you are going today too and I'm praying for all of you
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Woo Hoo - at the end of the day many of us will be halfway there.
For those premenapausal women still getting their periods, are you on TCH/TCHP yet? That is what I am on, and I have now missed two. I wonder if it is the different drugs. Also, although since having my twins in 2004, I have had 'hot' issues at night, but still been every 28 days, hummmm could it be my husband, the oven and not me? But now my nights are awful, hot sticky/sweaty, cold, hot, cold. I've sent my husband to another room and it hasn't fixed the problem. I get hot during the day, but have been attributing it to August, or the oven is on, etc. Maybe I should think it is menopause... I think I need to go to CVS and get those personal fans that are on clearance now, in case it is., and even if it isn't, chances are it will be soon, as I'm 49
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still getting my period here too. Was a little surprised...also have no idea if this is a good thing, a bad thing, or irrelevant.
I never considered quitting, mostly because, well, I started this, might as well finish it...I did consider not starting it tho ;-) my MO was on the fence...if I had been older I think advice wld have been to skip it. But at 39, even w low grade tumor I wanted to do everything I could. One frustrating thing about adjuvant chemo is that you never know if it's working.
Congrats to pinkninja and others hitting halfway point this week!!
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knmtwins, you should get blood tests from your docs and they can tell you if you are perimenopausal or in menopause. I've heard lots of women having their cycles messed up from chemo. I had a partial hysterectomy in December (kept 1 ovary) because I had horrible endometriosis and fibroids. Best decision ever! When I go to the grocery store and walk down the aisle with pads and tampons, I snicker! I literally couldn't leave my house for 3 days cause I would hemmorage so bad.
Rain dew, I'm also meo adjuvant and I can feel my lump has shrunk to almost half the size. It was huge 4.6 cm.
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Pinkninja95, those hats are beautiful!!
Shirley
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Good morning July warriors! pinkninja, those caps are so cute and I love your blue wig! I have also just been wearing a bandana, my cousin picked up about half a dozen for me. Especially love the one with skulls...(not!) when I was in my 20's and lived on a farm that's all I wore on my head (yes, I was a back to nature hippy back then).
The Bentyl I have is 10 mg, every 8 hours. I too am one who generally struggles with big C, so was reluctant to take Imodium, and ended up needing rx lomotil because the Imodium wasn't cutting it. But with the addition of the Bentyl I only needed lomotil a couple of times this round, and have since been regular.
Mumford likes a chalet for us, Pinkninja likes to cruise. DH and I also like cruises, in fact I found my lump the last day of our last cruise. It wasn't exactly the best cruise ever... We were scheduled to leave the port of Galveston, when there was a ship collision and an oil spill in the channel. We boarded late, and then were stuck in port for 3 days. By the time we were cleared to sail, it was too late to hit our first two destinations, Honduras and Belize. But we sailed to Cozumel and back. Royal Caribbean gave us a complete refund with a 25% off our next cruise. We booked an open ended date, so we have a 7 day cruise waiting for us after all this is over. We are also hoping for this winter.
But I am in general agreement with Mumford, that we have built a bond that we want to keep. And we can do that right here. There's nothing that says this thread has to end when we are all finished with chemo, or we could start another thread for just the social and support aspect. I definitely want to stay in touch. I've been on a couple other threads where members have had the chance to meet in person, and there are some who are getting ready to take an Alaska cruise together in the next couple of weeks, and meeting with some others in various ports. Cool, literally. I myself am a warm climate cruiser. We like cruising from Galveston because we can drive down there easily.
Jennliza, you mentioned adoption, I am a birthmother. My only child was born when I was 18 & not married and I placed him for adoption because I knew he needed parents who could be responsible and that I was not. I never gave up hope that I would someday have the opportunity to tell him how much he was loved, from the start. He found me through adoption.com which has a mutual consent registry where I had placed a notice. He sent an email through them and we began corresponding. We have a beautiful relationship, in fact he was here for a visit when I went to my first MO appointment, and he went along. His adoptive mother died of cancer just a few days after I had told him about mine. When I asked him what I could do for him, he said, Stay alive. So I do this for him too.
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I survived. Thank you for the well wishes. I'm still dealing with morning "D" and crampiness, "cruddy" mouth, and the strangest exhaustion, but I'm definitely better. I went back through the posts to do some catch up reading and it appears that things are calming down for us. This is good.
Dancingdiva: My MO said that hydrocodone can help with the "D", so if there is pain, don't be afraid to use it.
Mumford: I am a huge advocate of the "iced" digits. First time around, I had zero nail or neuropathy issues and I iced at every infusion. The protocol is 15 minutes before taxotere until 15 minutes following. Thus far (3x) in this series, my fingers/toes are ok. I'm using frozen peas on my toes and gel mitts on my fingers. Hubby gets dry ice in the am and we pack an ice chest with my supplies and lunch.
I loved your donation. TY.
Knmtwins: TN = Triple negative. BTW: I am a MOT also. My first son turned 2 years old 2 weeks before surprise identical twin sons. They were big boys and #1 was smaller. For years people thought they were triplets.
I have a question about this exhaustion. I understand tired, but this seems somewhat over the top. Every fiber of my body trembles (but you can't see it) on a cell level after I do something as small as walk to the bathroom. It's like a silent buzz. I actually had to use a neck brace to hold my head up. I am somewhat better now. It's not as extreme because I can now go all the way up the stairs without stopping to lay down on the top step of the landing. MO said my red count was down "some" and I might get tired easily. Anybody else experiencing this?
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mags, what a touching story about your adoption. That's amazing that you now have a relationship with your son.
Mumford, after my second one I noticed that I was a lot more fatigued especially in my muscles. I walk my dog around the block and by the time I get home my legs and muscles are so fatigued. I'll see what happens after today's infusion and keep you posted
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well the port went amazingly well for the blood. I was exhilarated.
Then onc tells me the wbcs are too low and neutrophils are0.7. I need to wait one more week. No!!!!!! I 'm so upset.
Wasn't expecting this. There are so many flags up on my blood tests. Big bummer.
What are the consequences of this? Would I require a transfusion?
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