Starting Chemo March 2015

Msmath

Wow I was totally not expecting day one of chemo to be so messed up. My appointment was scheduled to start at 9:15 and last about 3-4 hours. Needless to say I was there until 4:00 after going through 2 allergic reactions with the premeds. The first medicine went in fine I went to the bathroom and had my port flushed. Then they put up a mixture of decadron and emed. The drip started and within 5 minutes I turned bright red and couldn't catch my breath and just started coughing. My mom explained it that I looked like the girl violet on willy wonka except instead of purple I turned red. As soon as they stopped the drip and flushed my port I came back to normal. My doctor came immediately and said to run the two drugs separately to see which one of the meds I was allergic to. The decadron went in ok and we were so relieved. We then waited a half hour before starting the next one. They ran the emed slowly and things looked good for about 15 minutes then all the sudden I said my feet were hot and I coughed. The next thing I remembered my chest was tight and I was red again. With my blood pressure back up again. They stopped it called the dr again. He said document reaction and in bold write ALLERGY. I was thinking I guess so. Now mind you we had not even started the chemo meds. Thankfully I did not react to the chemo meds. They said they will meet and think of a different premed.  I went for the Nuelesta today and have felt ok except for being a little tired.

Anyone else had a reaction similar to this?

rleepac

Wow Msmath...no allergic reactions here. Pretty scary though

Meme117

Sorry to hear BB, lousy when you really need hugs - here's 💓 a big heartfelt hug. I also read and try to remember that my family will also have to process their feelings about our breast cancer.

Welcome to all the newbies😄

I also can relate to the nesting, trying to unclutter my house and clean clean clean. Going shopping this weekend for the chemo bag - any must have or don't bothers? I decided after much anxiety to try a different MO and see how I feel before I start chemo. I figure it's a long process and I should really really really like the people and the place. It would be a 30 min drive instead of 12 minutes but after reading how far some of you drive. Appt set early tomorrow, port set for Tuesday, I'll be wearing my green.

I want to do a play list also, maybe we can share favorites? I was also thinking of a set of imagery cards, anyone have ideas? I had these during my sons birth and totally worked for me.

positivity for today - Life is 10% what happens to you and 90% how you respond to it. Stay strong ladies!

rleepac

time for some fluids...see if topping off the tank will help...

LisaZak

I got my haircut today. Lots of hair fell to the ground . I guess this will get me prepared for what is to come. The hairdresser was the one who set me up with my wig from the cancer society. She said, I'm going to give you a cut that you will love even if it only lasts a month...and I love it! When I walked in the door, my husband said, well look at you! You look amazing. He said he felt like he was cheating, lol! I haven't worn my hair short for 25 years. I face timed my son who is in Orlando at school and he said Mom you look like Mary Margaret, my fav. Character from Once Upon a Time. Now I am thinking that I will just get a short wig in this same hairstyle. Have my echo tomorrow and my teaching session with the NP. Ready to start this next chapter. There is a light at the end of the tunnel. I am focused on that!! Thankful to have found a group to go through this with.

SC_Coqui

thanks slothabout, I'll ask my Oncologist about what she says. I'm definitely a lot more clear headed this afternoon. I even went out for a burger and fries with my son. Seems like most of the side effects front this first one have cleared. I'm hoping that the next infusion will be at least the same.

Italychick

Rleepac, I hope the fluids help. I was wondering if you were out of balance with your electrolytes.

Just got back from my nadir (white blood cell count checkup) and everything was perfect. No restrictions. So on the bike again tomorrow! Now I have two weeks of "normal" before next chemo!

Done with all meds, mouth feeling more normal, no pain, gas, etc. feeling groovy!

MsMath, I reacted to the Taxotere and started itching, and they gave me Benadryl which stopped the itching immediately when I had my chemo

Italychick

so I have questions and comments regarding chugging a lot of water. When I saw the nurse practitioner today, she said part of the weight gain the few days after chemo is because they give so many bags of IVs to ensure they get all the stuff in you that is needed for chemo recovery. So she said my body is saturated with fluid. On several forums, I have read people saying drink tons of water surrounding the day of chemo. Doesn't this advice seem incorrect? Wouldn't drinking more water dilute the agents the chemo center gives to keep the body in balance? I'm thinking of horror stories of young girls doing ecstasy and dying because they then drink so much water they flush out their electrolytes. According to Wikipedia, most of Taxotere is eliminated through feces, not urine. So I am pondering the drinking tons of water question, and wondering what others are doing

rleepac

Italychick - I think it would be hard to chug that much water to cause a problem. I don't think you will dilute anything either. The chemo dose is the chemo dose and they do recommend you drink 'plenty' of fluids to flush it out so I think if you make a conscious effort to drink a good amount of water you will be fine.

rleepac

So I asked my family tonight to help me. This alien looking thing called a 'port' has me a littl self-conscious...I asked them to help me name it !

DH refused to touch it and just calls it my cool bump and joked that it looks like the mother of all pimples.

DD came up with Alf.

Someone else named their port although I don't remember what it was because I've been in a fog LoL.

Anyone else name your port?

BTW I am feeling MUCH better with extra fluids. Turns out that I was quite dehydrated

Jackbirdie

MsMath-so sorry about the chaos and reactions. Hope they have a new and foolproof plan ready for you next time.

Rleepac- so happy you got the fluids and you are feeling better. It must make all the difference in the world.

Italychick-you continue on embodying strength and leadership! Because of you, I've walked every day. I started out in poor shape due to a string of health issues over two years, so I didn't expect to be able to do any better than what I started with. The fact that I can at all is highly influenced by my regard for you, and your commitment to exercise and treating your body so well.

I am feeling very 💤💤💤💤💤..... Lots of dozing off, then up at 4am every morning. It started with the steroids, and they have always affected me terribly. And once my sleep pattern is interrupted, it's so hard to get back on track. Ordinarily, the strategy would be NO NAPS, but I can't deny my body the rest on day 6.

I hope everybody has a good night's sleep and a positive day tomorrow

Trvler

Rleep: Do you mind if I call you that? I keep having to scroll back and forth to get your name right. I LOVE Alf!!

I am not sure if I will be making the March chemo group or not. Apparently, my strategy to seek out the best doctors (not all necessarily in the same location) is a big problem for some people. The first MO I met with, while he wasn't happy about it, did say he would treat me before surgery. I didn't like him and he was far from home so I went to the other one closer to home yesterday. She refused to do anything until she had ALL my imaging. She is seeming like she doesn't want to treat me before surgery. I am going for a consult with the BS and PS's in NOLA Monday. THEY were the ones who wanted me to start chemo immediately. The MO from yesterday looked at me like I had two heads. I am getting tired of having to defend my choice of going to NOLA. But I will play a little longer and get that MO all the second set of imaging. She also said she would like me to have the biopsies on the cancer breast to know if she was dealing with a second type of cancer. Is a different spot of cancer likely to be a different type? I wonder.

Italychick: I am curious about the water thing, too. I feel like when I drink more water, it goes right through me. The most I usually do is 24 ounces of straight water and other things….coffee (one cup), La Croix(about 5 ounces a day) and I make a smoothie often with ice cubes. I think I am almost always in a mild state of dehydration. I saw that thing about the people drinking themselves to death after having X. ARe you buy any chance a Dateline fan? That's sounds like one of their stories.

I hope you guys don't mind me hanging around while I find out if my chemo is in March or not. I have grown rather fond of you all.

Home with a sick 9 year old today. She is usually a little challenge (nice word) but she gets adorably sweet when she is sick so it is easy at least. Had to go all the way downtown (about an hour today) to get an ultrasound of the stabbing pain in my non cancer breast and the doctor I specifically made the appointment with wasn't there so it was a complete waste of time. I am going back for biopsies Friday so I will see her then for sure. Just makes me mad I wasted that time and my husband had to get my other daughter off to school.

BoobieBetrayal

Hi Ladies,

I am new to this very exclusive club
Officially I havent started my chemo yet (nor do I know what it will be) as I have to do a round of IVF with my bf before but
I have a million questions regarding chemo to ask you all but my most burning one would be this;

Ive heard that the side effects and general wear of chemo gets stronger with each session you have. I should have 6 sessions with 3 weeks in between. I live far away from my family and they are asking when I might need help. Ive heard stories about people just storming through life during their sessions but I am not sure if I will be this person! So I've kind of told them that I probably wont need them until I have had my second session so around week 4.. do you guys agree with this?

Thanks in advance!
Veronica

Trvler

Welcome to the group, BB. I can't answer your question because I think a lot of it depends on the individual. I have wondered the same thing though. Have you read through any of the threads giving tips to make chemo easier on you? I have read getting daily exercise is helpful.

Jackbirdie

Dear Veronica- Welcome, but sorry we meet this way. I'm afraid there is no sure answer to this. I live alone also, with no family near and even friends hours away. I moved here to a new town 6 weeks before dx and didn't know anyone.

I am also thinking I would be one who will get sicker as time goes on. So far, I've had one treatment and it was manageable. Part of the reason for that is my best friend of 30 yrs flew 1600 miles RT to be with me the first day. And the next day when I shaved my head proactively, so as to avoid what I felt would be a horrible moment in the shower one day.

I would not have had it any other way in retrospect. I was far more nervous and scared than I realized walking in for my first infusion. All that being said, I would take any and all help. Any offers accept!

Hugs,

Katy

Trvler

Katy: Aw…I didn't remember you saying that about not having any family or friends near you. I am so sorry. Where do you live again?

BoobieBetrayal

Hi Katy,
I am sorry to hear your story I am glad to hear that your treatment went ok. I have my partner here but other than that we are pretty isolated so I dont want to lean on him too much. Time will tell.

Did you not want to try the cold caps method?
I am in the netherlands so I am not sure if they are used here at all but I want to try. I didnt dare ask the mamanurse as when I asked about side affects she rather callously said ''well of course all of your hair will come off''. No buffering the mesaage or even saying ''but dont worry you can get a wig'' or something like that. Sometimes its gets me. I'll try another person next time.

When is your next treatment? How many will you need to have?
Veronica

BoobieBetrayal

Thanks also Trvler, Im a keen runner so I was hoping that I might be able to keep to at least long walks. Again it is one of those things that time will tell. I just really hope that I am one of those super hero people that just powers through it all.
I read one woman saying ''I never missed a day off of work apart from my treatment days''
I am not aiming for that but it doesnt sound bad!

Take care x

Trvler

Veronica,

Sadly, you will come across many 'professionals' like that. I have met two MOs and the first guy was exactly like that. Then, every now and then, I come across someone with true compassion.

Have you read through the cold cap threads much? I was at a support meeting and there was one woman there who had made it her mission to teach people about cold capping. I think I am going to opt not to. Not only because of the expense, but I think it's a lot of work.

BoobieBetrayal

I havent read too much about it but I am curious.
I like the idea of the privacy that it will give and its a small bit of hope and even smaller bit of control... Plus I am only 32 so I am hoping that I can avoid permanent hair loss! :S
Here is hoping!

PrincessOfMeh

Katy, I'm getting mine buzzed Friday (the day after my first treatment) too! I just didn't want it to become a thing with me and give myself a little more transition time too.

Trvlr, I'm sorry you're having so much troubles assembling your team. My MO wasn't ecstatic that my breast surgeon is so far away (2.5 hour drive, one way), but it was either that or go with a general surgeon here. Uh...no thanks, LOL. Nothing against the local surgeon. I like him. It's just that if there's ever a time you want a specialist, i figure this is it.

BB and Katy both, you can count me in the no-family-nearby group as well. My grown daughter is driving in this weekend for this first chemo adventure and we have a friends here, yes. But we're basically lone-rangering this, at least so far.

Italychick

Rleepac, glad you are feeling better!

Jackbirdie, what a sweet thing to say! I am so glad you are walking everyday, and I'm sure Jack loves it too!

Trvler, my vote is that you absolutely stay on our site. Who cares if your chemo starts in March or April. We are all in this together.

Veronica, I sailed right through the first chemo, worked out almost every day, including 26 mile bike rides so far. I have heard it gets harder after more treatments, but I am taking it one day at a time, doing whatever I can that day. If I can't do as much after chemo no. 2, so be it, it is a few months of my life. But to me anything I can maintain as normal makes me feel more in control of the situation, if that makes sense.

BBwithBC45

BoobieBetrayal, I'm using the cold caps and it is a lot of work and commitment, but for some it is worth the effort. It all depends on how you think you will handle the thought of losing your hair. You'll have to weigh pros and cons. Check out the thread Cold Cap Users Past and Present - there is a lot of information there. I read quite a lot of posts and asked questions and it helped me make my decision.

BB

Trvler

Italy: I think it is great that you are continuing to work out. You are my inspiration. I am hoping to do that, too, although I know it will be hard because my main exercise is Jazzercise and I am not going there with my wig/scarf/bald head….whatever. lol I can do the elliptical or treadmill in our basement though. I am hoping you keep me honest.

Italychick

Traveler - Are you in the Chicago area? My brother lives there, and whenever I go we ride bikes on Forest Preserve trails or else along the Lake Michigan coastline. I was shocked at how many trails there are in the Chicago area for bike riding. And we ride nothing fancy like my California road bike. He just has cheapie Wal-Mart bikes for guests, but it is a great workout and enjoyable to be out in nature. Well, maybe not in June or July lol.

So WTH are your doctors doing? When are you going to figure out what is going on with the other breast?

Trvler

You know, I don't love bike riding because when you go on the trails the other riders can be so aggressive it scares me. We have a FP near us and have tried to take hikes there sometimes. I am not a great bike rider so I don't feel terribly confident.

We live in the north shore suburbs, yes.

I am going tomorrow to have A) one lymph node biopsy, 2 biopsies of possible OTHER cancer sites in cancer breast and 3) ultrasound and possible biopsy of right breast which had new sharp stabling pains but no lump. I have gone to doctors at both Northshore and Northwestern. I felt the imaging at Northwestern vastly outweighed that at Northshore so I am going there for all of this. Plus, I love the radiologist. Then on Monday, I meet the PS and BS at NOLA's BC. I have met 2 MO's, neither of which I really liked but NOLA wants me to start on chemo right away. The closer, more convenient center (northshore) MO doesn't like the idea of doing chemo first and wanted all that imaging and the biopsies to see if there were any other characteristics of my cancer they don't know about yet. I think that sums it up. haha

BoobieBetrayal

Thanks for the link BB, I'll check it out

Good for you ItalyChick working out every day! Nice!
I know what you mean about trying to keep it normal as much as possible, our lives are anything but normal right now but if we can keep at least a few bits of it apparently normal that is just fine and dandy with me! I figure if I can get to the second of the 6 chemos feeling ok then thats 33 % of the battle won right?!
Why is it when I say those kind of things I get this feeling that I am just going to look back on it and gently shake my head at the silly nieve girl i was!?
Time will tell. In the end we will be alright, we will get there, we just have to get there

Trvler

Sometimes, I think it's better not to know what we don't know. You know? lol

Italychick

Tvler, I am with you. I have quit reading what people say online about chemo side effects, etc. Because I swear, if I read a story about something, like somebody having back pain and worried about having bone mets, suddenly I have back pain and am in a sweat. What I tell myself is that the larger percentage of women go through lumpectomy/mastectomy and chemo, etc., and then move on to live normal lives with no issues ever arising again. So I have quit reading things and scaring myself. Yesterday at my doctor appointment, the nurse practitioner said do not read anything on the internet, most of it is wrong. So I am relying on this forum for advice and input, and forgetting all the other sites out there. One thing I definitely know from all of our complaints, the constipation/gassiness is the real deal in chemo lol.

Trvler

I don't read many other sites but there was one thing in my path report I couldn't find any info on on here. I found a study on it and the information was pretty accurate. It was about a term called 'loss of fatty hillum' in the nodes. More times than not, the study found, IT represents malignancy in the node more than even an enlarged node. Enlarged nodes can be caused by the biopsy as well. So it was helpful to me, because I fully expect to have + node(s) and that helps me to understand why I am likely to need or even want chemo.