Cytoxan Taxotere Chemo Ladies- February/March 2013
Comments
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Jeri my BS and MO were at war with each other as well. I finally said to my BS, I just watched my father die of stomach cancer I will not do that to my family, then she backed off. I still think she thinks I should not have done chemo, however a 2% difference is 100% if it's you!!!!
I was going to write her a card, thanking her for doing the biopsy on the side no one thought was cancer. Anyone doing anything- card or gifts for their doctors?0 -
SC...good thought on the card. I think I will send a Christmas card to my BS. He was amazing...probably one of the favorite doctors I have ever seen for anything. Not only is he a good surgeon, but he just went out of his way to make sure i would still be able to do my job afterwards, get back in shape, etc. because he knew how important it was to me. I do want to send him a card to make sure he knows how much I appreciate that.
SC, my MO was all for chemo because of my age too. I am 43, and I wanted to be aggressive and do chemo as well, so we were on the same page with that.0 -
Good morning ladies. Wow, we are all going through the same thing with so many different stories. Good to hear everyones' experiences and advice.
SC, I love the idea of sending cards to our Dr's. I will copy you! My medical team has been amazing and so on board with my needs and concerns.
So far, my Dr's have all been on the same page with my treatment, thank goodness!
My chemo list is getting longer every day.
Just got a call from the hair donation folks. They are so nice! Found a place for my grey hair, so it's not wasted:). That has been on my bucket list for a few yrs-one reason I grew it out, but never dreamed of the purpose and timing God had for me in doing it!
((HUGS))
Terri
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yes, I felt the same about being close to home for chemo - the infusion center is only 5 miles from my house - while Sloan is only 13 miles, it's the GWB toll and parking and outrageous traffic.
Just went outside for the newspaper - brrr - I am so not a cold weather girl (walking).
Jeri - great to hear about the program
I hope Monday. I still have my hair as I've only gad 1 infusion. I haven't gotten my kit yet.
Yesterday I ordered a free head wrap --- I didn't wear them much last time (gave them away) but last time I went through this in the warmer months......
Feel ok today 2 days post infusion........no pain from my Neulasta shot.......no nausea.......just tired.....(fingers crossed)!!!!!0 -
yes, I actually did - and I bought the real stuff not the generic since that's what the clinical trial was based on. I don't remember having an issue years ago with the Neulasta, but the nurse suggested it....MO didn't. And I of course read it here. I just took the "couldn't hurt" attitude. And actually I am sitting here in no discomfort thinking oh I didn't take a Claritin lol 0 -
SC & KBeee, My MO said that I am getting chemo because I am under 40. He said if I was say 55, he would only recommend hormonal therapy. I agree with KBeee. I was fine with it because I want to be aggressive to avoid recurrence. I have too many years left!
JeriGrace and SC, I am really lucky with my cancer care center which is just 15 minutes from my house. All the key players (BS, MO, etc) meet regularly to discuss patients and plan their care. I never had to carry paperwork between appts or get a particular doctor up to date. My BS even pulled my drains for my PS during my port placement. As a result I had my BMX two weeks after diagnosis and chemo four weeks later. This has been the one true blessing for me in all this mess. When I read about people having to make decisions when even their doctors disagree it makes cringe. It is hard enough without all that. I really feel for you!
As for the card question, I know several doctors personally and I can tell you they always appreciate a card or note. When they get a note thanking them for something specific, like taking the time for explanations or to listen to a patient, they are even more likely to do it again. I am definitely going to be sending my doctors Thank You cards when I am done with all this. I'd give them a kiss if I could!0 -
wrenn - yes I ran to CVS just before I got my shot. I read here to take the Claritin 1 hour before the Neulasta then continue to take it a few days afterwards. I just took the Claritin now - again, I don't remember having an issue last time so it might be overkill.
Thankfully all of my medical team agree as well...and I had my mammos/biopsies in one hospital, my surgeries in another, and my chemo (where my MO is) in a third. Lol0 -
Not sure when I am getting port, having blood drawn today during nadir and he said maybe week or so after that when my counts go back up. Sure don't want to get it done though- tired of it all -Feeling exhausted this am, could've stayed in bed all day. Had more energy yesterday, I thought I would get better daily?? Maybe this is normal? What do you all think? Do you go back n forth daily or gradually get better?
My Dr said nuelasta next time depending on bloodcount this time...
I don't have energy to walk and certainly don't want to shower and go to dr! You walkers are amazing- I hope next week to have energy!
Not sure how much good oncotype does when premenopausal...it is for postmenopausal women- but I guess another 'tool' to use
I used to work as a nurse so I should've known about the veins hurting in chemo but never dealt with chemo when I worked so ignorant of 'normal during infusion'- I just trusted the nurse,, now I am typing with one hand as constantly icing my left arm!
I have Aetna too and rx for my wig but I paid cash when buying so not sure if they will cover it or not
I have my period too currently and am using pads which I haven't since grade school- gross! One more fun thing to deal with..
LOVE this site and all of the support! I am going to nap this morning and hopefully wake up with energy to get to Dr
Happy day!0 -
hugs Audra- so so sorry you are struggling... Hopefully this is a blip (a big one) but you will power through it!!!
I had a Ki-67 number --- that was pretty high (76%) - fairly certain that is due to the TN.0 -
Virginia, thanks for your input on the neulasta/claritin. I will ask my MO when I go in for chemo. Good to know.
audra, I hope this is your worst day and it will get better from here! Hoping you can get the port in soon and get it out of the way.
There is also another test they are doing called a mammaprint. It doesn't measure the effectiveness of chemo, just potential recurrence, I think. I decided to forego that in the interest of time. Just want to get this done and behind me.
I am going to my daughters' today to hang out with her and the grandkids:). Always a good "pick me up"!
Happy Hump Day!
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keepthefaith- If you want to show your MO some information about the on going clinical trial that is studying the effects of regular Claritin on the bone pain associated with Neulasta, here is the link: http://clinicaltrials.gov/ct2/show/NCT01311336?term=claritin+neulasta&rank=1. My onco was unaware of that Claritin could possibly help with the bone pain, yet she said I could take the Claritin if i wanted to. I didn't experience any bone pain associated with the Neulasta shot but I still had joint pain and muscles aches which I attributed to the chemo itself.
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Thanks Melrose! so, do you continue to take the Claritin for a few days after the shot? I have seasonal allergies anyway, so I am sure it wouldn't hurt to take it to keep those symptoms at bay, if nothing else. I will def ask my MO.
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Wren - my MO at Hopkins hadnt heard much about Claritan but said it was fine to take if I wanted to do so.0 -
keepthefaith- The clinical trial drug protocal is to take the regular 24 hour Claritin for 7 days starting the morning that you receive the shot. For instance, if you had chemo on Tuesday. You would have a Neulasta shot on Wednesday and that would be the day to take the Claritin. You want to take it prior to having the shot so that it is your system before you have the shot. I used to receive my shot in the afternoon so I would take the Claritin at breakfast time in the morning. I took it for 8-9 days. FYI: One of the side effects of our chemo is a runny nose since one's nose hair is also affected by the chemo. The Claritin may have no effect on the runny nose. Also, because of the lack of nose hair and the use of indoor heating, one's nasal passages may become a little dry and
one may have nose bleeds. You may try putting a little vaseline in your nose and also use some saline nasal spray like Ocean spray.0 -
JeriGrace, my request for the oncotype is more for deciding if 4 TC are ok or if I meed 6 TCs instead. When I met with my MO for the first time he mentioned the wait for the oncotype results, three weeks! I said no, and to start with my chemo treatment right away. I wish there could be a way to get the oncotype test done to help in deciding if six or four treatments.
Are you doing four TCs?0 -
Headeast, I will let you know what my MO says as far as my oncotype, and what he thinks about 4vs 6 based on the results, and any other factors which weigh into the decision. I know he has not used it in this manner before; I wanted it as one other piece of the puzzle to make sure that the number of treatments is most appropriate. He was not sure insurance would cover it, but they did.
Audra, i find that I have ok energy the first few days, am in pain for a few days, then have decreased energy week 2 (when counts likely drop)and then I regain energy the third week (when counts likely rise) rinse...repeat. It sounds odd, but I have more energy after my walk than before. the hardest part is mustering up the energy and will to get my sneakers on some days. Once I do, it is probably my favorite part of the day. Fresh air, getting lost in my music, makes me feel great!0 -
kbeee, I have to push myself to walk. I was saving energy today to go to an event I organized before knowing I would be doing chemo. Exhausted now... And was traumatized every time I had to shake hands. Today is day 8 and freaking out! I am back at home and feeling tired but safe, ahhh!0 -
Headeast, Week 3 usually brings more energy as your counts rebound. Put your feet up, get your rest now, and look forward to the good days which will come. I hate shaking hands too! I think i have about 20 bottles of hand sanitizer...always have some in my pockets!0 -
kbeee, good I am not the only crazy one! Can you imagine I started shaking hands with the sanitizer on my hands, lol! Yes, leggies are up and feeling less tired now. I was standing up for too long...0 -
headeast- cracking up at the hand shaking horror!!!
kbee- so I am just at 1 week tomorrow does that mean I still have a week to go to feel better? I hope not!'I got blood drawn. took 2 sticks and turniquet made my wrist area that is sore buldge and throb I almost lost it= this arm thing and my period with 'pads' is killin me!!!0 -
for all on Neulasta ....
I took the Claritin day of shot and for 6 more days. Very little bone pain. My MO said there is. no earthly reason why it should work, but his onc nurses swear by it, so he said go ahead. My BS also suggested taking it, and she said they aren't sure why it works, but it does. On the Oct chemo board, there is a knowledgable nurse, SpecialK, who said the Claritin decreases the inflammation in the bone marrow! which eases the pain. I shared that theory with my BS and she said it makes sense.0 -
melrose, thanks again for the info on Claritin. I feel like once I figure out what I am doing, maybe I'll be done!:) I am a huge planner, so this is all helpful info.
Headeast, genomic did my onco and it took a little over 2 wks, if that matters. Haven't heard of it in deciding about how many treatments, but I guess it wouldn't hurt to have the extra info. Wouldn't it be nice if this were a bit more black and white instead of gray all over?:).
kbeee, glad you are getting out in spite of how you feel. I hope I can do the same. I am not a fan of cold weather, so that may be a very convenient excuse...but, I do have an exer-cycle...so maybe not.
I'll be cutting my hair on Friday-at least 10''s off, so I won't have much left. Visible Changes cuts for FREE and I have someone that I use there already, so it is perfect. I got a little emotional about it earlier when I told my Son and DIL that the next time I see them, it will be a short cut. This is so not fun. Can someone pls just wake me up when it's over?
Good night ladies-thanks for being here!
((HUGS))
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Week 2 I felt much better, but just tired. Week 3 I feel pretty "normal" each time. The first 2 rounds I really felt quite good week 2...this third round i landed in the hospital with a neutropenic fever, which is why i kind of "skipped" week 2 in my description of feeling better. As annoying as it was to be there, I really did not feel bad... just bored.
SC...Hope ll goes well with round 2 tomorrow. Who else goes this week?0 -
Audra, what I did is tell people I was in nadir (not that they understood what I was talking about) and that was doing a chemo treatment. It actually broke the ice on many people and they some introduced me to others that had cancer and are survivors. It was pretty cool. Everybody or almost everybody has a person in their lives who has passed through this. They actually feel proud of knowing somebody who is a survivor. Made me feel good0 -
Headeast, my MO ordered 4. I think that is his standard protocol. After some complications with the first tx he reduced my TC by 25%. So there is always that question in the back of my mind about whether I got "enough" although he told me it wouldn't make a lot of difference.
I met with my endocrinologist today. I have type 2 diabetes and my blood sugar has been sky high for several weeks. I thought I just needed an adjustment to my meds or maybe a little more time for the chemo to leave my body. Unfortunately my doctor thinks the chemo probably damaged my pancreas. I didn't know this was a possibility so I have been in a bit of shock since hearing it. If I do have permanent damage to my pancreas, that has a huge effect on the rest of my life. For now the doctor is increasing my meds and checking in 2 weeks to see if things get back under control. It seems there is just no end to the second guessing that comes with this disease.0 -
Oh Jeri ((((hugs))))) that must have been so hard to hear. I am so sorry. I did not know that was possible either. You are so right there is no end to the second guessing or the anxiety, which is probabay why I awake at 1 am the day of my infusion......0 -
Just had my first TC yesterday took 3 hours. I feel loopy, dizzy, and mouth swollen. I have had “vomit” reflex. Last night I kept waking myself up choking on the “vomit” reflux. I did sleep at 45 degree angle at one point and that kind of helped. The ONC pre scripted Promethazine, which I’m taking every 6 hours. I worried about taking that medicine, because I have asthma and apparently it causes breathing problems. I also feel like my body is on fire but I have no temperature I wonder if my body is going into Menopause so soon. I’m drinking about 130 oz of water. Today I go for the Neulasta®. How long does the “vomit” relax last?0 -
FairyDogMot- I get that same reflux, I just had my second TC tx. Mine lasts for a few days, with that first night being the worse. My dr. prescribed simethicone(80mg). I was skeptical,I remember giving that to my son for colic, but it really did help.0 -
Fairydog , call the doctor and tell them your SE, they might give you someting else.... I am getting ready for the chair at noon today0 -
Wishing the best to all the ladies that go to treatment today.
One less to go!0
