March 2012 chemo

fedfan

tc9876, I had tightness and feeling of short of breath in my chest yesterday and still having the shortness of breath today. I feel a little better since I went out for a short walk. I didn't call my doctor because I usually have to leave a message on voice mail, and wait for a call-back. I get the feeling sometimes that the nurses are irritated when I call. They know this forwards and backwards and we're just novices. How are we supposed to know when something is serious or to be expected?That's why this message board is good; we can compare notes and start to get a sense for what's normal and what's not. Is there anyone else in this group that is being treated at Moffitt Cancer Center in Tampa, Florida? 

tc9876

Fedfan:  It sounds like we suffered from the same thing.  I will post IF I hear anything from my Dr.  I agree that it is impossible for us patients to know if something is a major deal or a minor deal. 

journey4life

Interesting about the Dr calls and call backs. I went to Chemo 101 yesterday and asked those very questions: "when do I call" and "how do I know the difference between something normal and something that needs to be reported." They told me to report everything that was unusual for me. All of this will be unusual !!

QuinnCat

To any that are getting Adriamycin.  Admittedly, I did not go into a full discussion with my MO about why she chose to use this chemo (or any others), but after reading below (undated, so could be out of date), I'm starting to wonder.  I don't intend to put doubts in anyone's heads about this chemo, more just want confirmation that is still state-of-art chemo for our personal situations.

http://www.curetoday.com/index.cfm/fuseaction/article.PrintArticle/article_id/41

Any thoughts? 

Amymomto5

Hello to all the new ladies. I am relatively new too - start chemo March 13. I have already learned so much from the brave women who are marching ahead of me!

JennL - My BMX was the day after yours.  I am 41 with an oncotype of 16.  I told myself if I didn't have a single digit oncotype, I was going to do chemo...

tc9876 - your doc should definitely have called you back, especially with chest pains. I thought they took that seriously. My oncologist has 6 nurses, one who just answers the phone, and they told me they call back within 2 hours (course, I haven't put that to the test yet!)  

Bev and sissydi, happy birthday!! Two of my kids have birthdays the 11th and 12th.

KatyCB - Sounds like you have had a lot of chaos with your schedule!  I too would like to wake up and find this isn't happening! Yes it is surreal. Good luck with your treatment. 

To all of you in treatment already, I hope your SE's are minimal! 

fedfan

Kam170, I'm getting Adriamycin and Cyclophasmaside (sp) every two weeks for 4 rounds; then I do 4 rounds of Taxol. I'm being treated at Moffitt Cancer Center in Tampa, Florida. They are supposed to be one of the best in the country. So I hope that would mean I'm getting the best drugs for what I need and I hope you are too. 

Sissydi

Girls whose doctors are not calling back.......be persistent. No, onc docs especially should be on the ball with your side effects! Don't take no response as an answer! Keep calling, and if you have to, show up at the office. There's no excuse for this when your on chemo.

fedfan

I did a nice walk this morning and just finished doing my exercises (the lymphedema precautionary stretching exercises). I also incorporated some deep breathing and semi-meditation(which I know nothing about, but did what felt good and was relaxing.) Chest no longer feels tight, and my breathing feels good. This whole experience is crazy. It has to be taken not just one day at a time, but one hour at a time! Hopefully with some trial and error and a lot of suggestions from each other, we'll get through these side effects.

Kadia

Welcome, new sisters!



I agree about sometimes needing to be persistent with calls to doctors. It's definitely never wrong to advocate for yourself. If something feels off and isn't one of the expected side effects, keep calling until someone calls you back!

tc9876

FedFan:   I'm happy to hear that the walk eased some of your discomfort.  You DO have to sometimes take things one hour to even one minute at a time.  I'm still feeling well but I'm going to call my Dr. right now to understand the policy. 

 With respect to Adrimyacin, my M.O. specifically told me he doesn't use it at all due to the potential heart issues.  What confuses me now is why some people get Taxol/Cytoxan x 4 while others get Taxotere/Carboplatin x 6.  As a member of the latter group, I feel like I'm getting an extra 2 doses I didn't ask for.

Brax (my chemo partner in crime):  You've been quiet.  I hope that all is well and you are coming out of your first treatment side effect blues.

Kadia

Tc, the 4 dose v. 6 might have something to do with HER2 status, but that would be a good question for your next appointment. I hope you feel better soon!

journey4life

Fedfan - my regimen is the same as yours. By the way, what exercises are you doing to prevent lymphedema? I had 22 nodes removed so I'm an excellent candidate for it and would like to do everything I can to keep it from happening.

I agree with all Marchers who said to be persistent with your MOs. No one knows our bodies better than we do and if it doesn't "feel right," chances are it isn't and the MO might be able to do something about it. 

Bev and Sissydi - Happy Birthday! Be sure to celebrate your special day!

Masserz - how are you? Hope your SEs are minimal.

kltb04

Ladies, I have another random question...I wear contact lenses and wonder what anyone has been told about those and chemo.  I am sure I will find out on Monday.  I am actually on my last pair and have to go back to the eye dr to get another prescription but is now the time?  Should I wait until after chemo?  Or maybe I should just get used to my glasses.  My mom gave me a pair of the sunglasses that fit over regular glasses (I cannot stand to be outside without sunglasses) so maybe I should just deal.

journey4life

Karri - I also am a contact lens wearer and would be interested in the answer to your questions. Its the first time I've heard it mentioned.

KCB

Hi nsmolen! I start on the 13th as well! Counting down these last few days...

KCB

Karri: I am interested in the contact lense question as well; though these days I can't tolerate them very long anyway, but I feel like it might be nice to have options if it's alright. It's so nice to know you're all out there somewhere,....

journey4life

KatyCB and nsmolen - I start on the 13th too. I'm making a list of items to get before Tuesday: Claritin D, Immodium, Senekot S, Tylenol and Gatorade (or something like it). Am I overlooking anything?

fedfan

lisajcj, they are exercises given to me after my first surgery back in December. At that time I had sentinal nodes removed on left and right. Later pathology found nodes on left to be positive, and after another surgery, had 13 more removed. Total 17 removed, total of 6 positive. The exercises range from the simple like turning my head from side to side and holding, touching my chin to my chest and holding, all the way up to the more stretchy ones like walking your fingers up the wall. The physical therapist at Moffitt Cancer Center gave me the instruction packet and reviewed them with me. They might have them on their website. I try to incorporate a lot of deep breathing along with the exercises. That helps a lot. 

kltb04, I am a contact lens wearer. I was told it was okay to wear them as long as they felt comfortable. Right now I'm just wearing my glasses. I'm sure my eyes are probably dry right now and wouldn't be that comfortable. I was also told to be extra diligent about the cleanliness and care of the lenses if I do wear them. So for those special times when we want to wear them, I think it's okay, just handle with care. 

Amymomto5

Hey girls, I start the 13th too. I hope to switch to Wednesdays after the 1st treatment.

 I have a question about constipation... Colace has never helped me, I may use Miralax.  Should I take a dose the day of chemo or wait til next morning?

Masserz

Welcome to all our new folks. It's nice to have all of the support of this group, but it's making me sad to see how many of us are in this boat! And lots of us are in our 30s...not what we were expecting to be doing at this time in our lives! I would highly recommend you read through the previous posts. The wonderful women who have already started have been very kind to share their experiences with us and it's very helpful knowing what to expect and it also helps you to know what questions to ask your own doctor.



Well, I'm parked in my chair here this morning with my saline and premeds going. Should start my infusions shortly. My cheeks are hot and my DH says they are quite red...I wonder if it's from the decadron. Will have to ask next time a nurse stops by. The staff here is amazing. I feel more like I'm at a spa then a medical office. : ).



Is anyone else using a sancuso patch? I haven't read anyone mention it but I'm curious if anyone has had any issue with it.



Tc- I think that's horrible that you aren't getting call backs! The is no situation in which that is acceptable. Isn't there a nurse there to talk to? Honestly, I would have a good talk with my doctor next time you do talk to him. You aren't on antibiotics for heaven's sake! This is dangerous stuff and you need support and, if nothing else, assurance. Maybe next time you call you should tell whomever you speak to that you aren't getting call backs and need to speak with someone right away. Good luck and so glad you are feeling better now!

journey4life

Amy - I will also be switching to Wednesdays after the 1st tx next week.

Masserz - forgive me! I thought you started tx on Tuesday. Hope your infusion goes well. Are they giving you steroids? If so, that could account for the red hot cheeks.

fedfan

Amymomto5, get on top of the constipation issue before the chemo starts. You want to be as regular as possible going into this. I've been taking stool softeners for months now, but I started eating a serving of prunes everyday about two weeks before my first treatment. It seems to have worked for me. I had my infusion on Monday, 3/5, and I haven't had a problem with constipation yet. Stools aren't the same shape they were before, but have been coming out relatively easy...hope this isn't TMI, but we are all in this together, and getting a good daily BM can make a big difference in how we feel. Those of you who haven't starrted treatment yet...start incorporating some more fiber in your diet and some natural laxatives like prunes. You don't want to wait until after treatment starts, get blocked up, and have to resort to a strong laxative. Here's to healthy pooping, girls!

Love74

Hey girls! I was just at my pre-chemo checkup. My bloodwork was excellent so the beans and peanut butter worked! Remember - lots of protein!!! I am in Canada and was told that there is not just a shortage of morphine going on here but also a shortage of injectable drugs like benadryl and some of the IV anti nausea meds. I have to bring benadryl tablets to my tx tomorrow. I take my steroids and anti nausea by pill so it wont affect me but I thought I would let you guys know.

Msbelle

I had diarrhea after my first round of chemo. Glad I didn't take anything for constipation before tx or it could have been worse. Just remember to drink drink drink and drink some more water before during and after!!!!

Sissydi

Masserz, my nurses called it : the Decadron flush

journey4life

For those on A/C tx - did you experience diarrhea OR constipation after your treatment?

brax

Hi Ladies...Today is my day 7 and the first day with no headaches for me.  I did think one might be coming on earlier and took ibuprofen and it worked. Prior to today medication was not helping the headaches so it might sound like I'm contradicting myself.  I should say managable headaches.  My only problem now which seems minimal but kind of annoying is some nose bleeds and then scabbing from the clotting.  I'm thinking aquafor might help with that.  I also developed two sores one on my lower and upper lip but inside.  I still have taste which I am thankful for and really can't complain:)

I sympathize with TC and the others who are not getting return calls from their doctors.  At my center a nurse will return your call but my experience has not been good with this.  It takes hours for the call back and they basically restate your question and then try to get an answer which takes several more hours. 

TC...glad to hear you are feeling better!!!

I wear contacts and remember reading somewhere that a lot of tearing can occur and some people opt more for their glasses.  So far I have been wearing mine, and it never came up on infusion day.

I don't know my onc score I don't think I have one.  I asked at an appt and they said that did not apply to me.  I am very confused about that now, since it seems more people do than not. 

 Welcome to all the newbies!

brax

Kam170...Thanks for the link on the anthracyline info.  I find it really interesting how different everyone's experiences have been.  When I went to my onc. there were no options, very little discussion, and answers to my questions went like this, you don't have an option, you have no choice, and shoulder shrugs.  It was a real turn off for me. 

I started researching on line like crazy and I saw that women with what seemed like similar scenarios...grade, size, stage, her2 status etc. were mostly receiving another chemo.  I researched that.  And then I got angry because it seemed that there was a choice, and it was never presented.  I then went for a second opinion and both treatments were given to me as options and the onc went over the risks, benefits, etc.  I had so much more respect for that doctor, I can't even tell you.

 I think the answer may be different for each of us, but we should have a part in making the decision!!! 

And I forgot to say that when I started educating myself, it was implied that I was spending too much time on the internet.

Masserz

Hi everyone asking about contacts...I went in for a check up prior to starting (and got the most adorable nerdy glasses!). My Opthalmologist said chemo doesn't change your vision but there can definitely be comfort issues. He strongly urges his patients to skip the contacts if they have dry eyes or excessive tearing. There are so many fun frames out there, I decided to have fun with it.



Kam, kudos to you for getting a second opinion. Your first doctor sounds irresponsible and that probably would have been the way the rest of your experience went. I have found that most docs start of with minimal information because they don't want to overwhelm you and not everyone wants to be super involved, but if you ask questions and tell them you want details they respond. If they don't, run.



I did confirm the flush is from Decadron. She said it may last a couple of days. I just look like I'm wearing too much blush. : ). So far otherwise it's going well. Starting to get a bit of a headache and my eyes feel heavy like when you need a nap, but that's about it. On my second drug now so about an hour and a half left. Oh and Lisa you are correct that I was originally scheduled for Tuesday but it got pushed out a little. I think it will work better for me anyway, except now my last dose will be on my DHs birthday. : (

KCB

Hey Love 74, where are you in Canada?