Starting Chemo January 2017

newt72

Hi everyone, I mentioned maybe starting a FB group as another way for us to connect. I know not everyone does FB and I wouldn't expect it to take the place of this board and there is definitely a lot of invaluable information here from everyone who has already been down this path. I know it's been a great source of information and comfort for me, so I'm definitely not looking to abandon this board. However, I think FB can be useful to connect in a different way. There's so many posts here, that I know I have missed several questions, advice, and input from others. It's a lot easier (for me anyway) to jump on FB and read or respond to something. I hope you all will consider joining the FB page as well. It will be "secret" so no one outside of members will be able to see it, not even your FB friends. If you would like to join, you can either "friend" me on FB (Cher Cline Newton) or give me your email address that is linked to your FB acct and I should be able to add you that way. Just let me know here if you are sending me a friend request because I don't accept any old request

sisterhasbc

Hello. My sister is supposed to start chemo (AC) on Monday. She has had a bad cold all week and today she is still coughing and congested--will they be apt to delay her start until she is fully recovered and asymptomatic? Thanks

Provence

Hi newt72, I sent a friend request. Thanks for setting this up. Thanks, LuAnn

Lilo244271

newt72...I sent you a FB friend request.

Lisa Lopez

newt72

@sisterhasbc - I have not had my first chemo yet so I don't know for sure, but based on what I was told at chemo education I think as long as she doesn't have a fever they will still do it. Although, one kind of chemo (Taxol I think) does cause sinus congestion so that could be an issue. And I suppose if she's coughing, they may prefer she not come around other patients due to compromised immune systems. Hopefully she'll feel better by then and won't have to be delayed.

Goincrzy8

sent FB Sherry Hartley Scott

Zolagirl

Madofaith - welcome to our group even though I'm sure you'd rather not have to be here. It looks like we have very similar diagnoses ( except that i am ER/PR+) And identical treatment plans. I am one treatment ahead of you and will have my 2nd AC dose this Thursday....You can do this, as we all can together!

We are all taking baby steps along the way of this big giant road ahead of us, but as my close friend keeps telling me, no one is assured the next day, that's why you live and love life and take it one day at a time! I had to pull myself out of my funk to listen to her, but it really is so true. And getting through my first chemo treatment was a huge weight lifted, the fear of the unknown really can be our worst enemy. Reading about and talking to others who have gone through this, and having support of a wonderful medical staff have made the fear, and the side effects, much more manageable. Oh yes, and a bottle of Ativan to ease anxiety at times helps too!

Jens74

Hi!

I also sent a friend request. I will be active on both.

Day 8 was a tired day for me. Lots of couch time and reading.

Today is much better, but my taste buds have taken a vacation and my nose decides with the fridid Temps and dryness, it might as well start bleeding if I bend my head over clean white laundry!!!

Sometimes I think someone must be laughing when they deal out these SE cards for the day!

Madofaith

Newt72, I have sent you a FB friend request.

Madofaith

I"m getting my port on Monday. What can I expect?

BG46TN

Goincrzy8 you might not lose them! I finished all my AC treatments and still have my eye brows and eye lashes!! I start taxotere on the 20th...hoping I keep them through that too!

I did stop wearing mascara just because I try not to touch them LOL

Positive2strong

Hello Everyone,

I don't know what is wrong with me, I am so avoiding Chemo. I called To start my Chemo and my doctor was off for the day. They have said nothing about a chemo orientation just handed me a folder.

Has anyone taken anything to relax you before the infusion. I just have a hard time dealing with being held there for 3 to 4 hours.

You all are doing so well, I admire you all. I really have no one to talk to. mMy DH thinks it is nothing and if he does think it is a a big deal I think he thinks why talk about it to get me upset.

Did any of you do a lot of housecleaning or anything before you had your first treatment. I think I should but seem to be frozen doing not much.

I am open to Facebook.

I really like to hear from survivors....it helps with the what ifs. I have a friend 20 year survivor, in fact she did a comedy routine when she was doing chemo, but she doesn't have much time to visit with me. She is very busy. I do understand that she is enjoying life and sometimes I wonder if she wants to leave BC behind.

All of you that have cold and snow stay safe and warm, I am a weather wimp and I can't stand the cold and rain here in Southern California even though I know we need it.

This group is so important. My first flight I took after my lumpectomy I felt so different maybe even fragile to fly even though I had no pain and fortunate that my breast looked almost the same and I just felt many of the women who helped me thru the lumpectomy were with me. As soon as I could I got on my ipad to read the posts and communicate with my BC friends. I don't know sometimes weird emotions appear.

I appreciate all your posts and experiences

Positive2strong

BG46TN

Postive2strong I know how scary it all is! I was scared to death when I first found out I had bc and doing all the tests etc. I didn't have surgery yet (having it after chemo) but honestly I can say once I started chemo I relaxed a bit...I KNEW that I was fighting it at that point! yes its scary, esp when you hear all the side effects people are having etc...I just finished my 4th AC and I can honestly say that I had minimal side effects and very few "bad" days...I am working through it all and have young children.

its the unknown that's scary. Talk to your dr about it, my oncologists office had me do nurse education appointment where she went over exactly what chemo was like, possible side effects etc...it definitely made me feel calmer...

I'm glad you called your dr, I think you need to just set up the appointment to get things started....it is a rough road ahead of us but just think you are saving your life! this will all be behind us soon!

I didn't take anything to relax before my first infusion, but some women do, ask your dr to prescribe something. It was really uneventful once I started day 1...

I did clean up a bunch at home before my 1st treatment because I didn't know how I would feel, my husband also helped out a lot with getting things clean (bathrooms etc) to prevent germs from getting me more sick....

I'm not a survivor YET, but my sister had bc years ago and is doing great and my mom had it 30 years ago!! she is a survivor too! going strong at 84 with no reoccurances!! I know MANY personal friends who are survivors too...be strong!! you can do this!! ((hugs))

Positive2strong

BG46TN

Thanks, all your words help

I should start cleaning

Lilo244271

positive2strong...you can do this. I sometimes feel super down too. My hubby likes to avoid serious issues and doesn't talk about how he feels. I know that he is trying to stay STRONG for me. Everyone copes differently and that is ok. I'm glad you have connected with us here.

BG46TN...I'm happy to hear you didn't have many SE with your AC treatment. Did you loose your hair? I hear that some women don't. That is actually the scariest for me.

So I went to my out of town workshop. I had a momentary panic attack when I was getting ready to leave the hotel and my hubby last night. It was the first time in 5 weeks he wasn't going to be with me to take care of me. I worked thru it but it was a but of an eye opener. I decided to skip today's classes and come home. I just am not ready to go out yet.

It's rainy here so I'm snuggled in bed with sweet puppy. Going to take it easy today.

BG46TN

Lilo, yes I did lose my hair, and yes that was probably the hardest for me too :-( It was about 2 days after my 2nd AC treatment...it was coming out in clumps in the shower, I broke down crying and made my husband cut it...I wanted to have some control over when it came out, seeing piles in my hands was too hard for me.

Once you head gets sore, cut it short, I even had him buzz it, it felt MUCH better after that....also make sure you have a soft cotton cap to wear to sleep....and a wig ready to go. I also bought a soft cap to wear under my wig, wearing it with nothing was too scratchy/itchy.

So yea, minimal SE with AC....the day of infusion I was fine, day 2, I was also fine...my Neulasta onbody went off about 3:30-4:30... day 3 I would have some aches, pain from the shot..nothing too too bad, I would take advil, use some heat on parts. It felt like the flu body aches. I would get the shot put on my belly (I learned after putting it on my arm once...that time I had horrible bone pain) I also took the Claritin from day 1 for at least 5 days. after that I was usually pretty good, just tired, took naps after work most day. I would always take the Zofran (anti nausea) pill like clockwork! don't give yourself a chance to feel sick! I would do that for 5 days...but it does cause constipation so prepare for that....drink lots of water! rest when you need to....by the time my second week rolled around I felt totally normal, minus hair LOL

bareclaws

Today is third day after first AC. I have found it much easier to weather (so far) than the TCHP that I started with in December. (I felt good enough yesterday to go car shopping. My chemo/cancer consolation prize?) I still have most of my hair, though much thinner from the TCHP and hope to get stuff done before it all comes off and I retreat into my cave. I started out with using the Dignicap (cold cap), but they booted me out of the trial program when I had to switch to AC. Anyway, bloating from chemo, steroids, Neulasta. I hate that. Measured my waist yesterday and it was 2" over my normal measurement. I should be grateful that I have no pain from Neulasta. Even without Claritin.

Lilo and Positive2strong, I am hearing you about your husbands. My husband of 44 years died unexpectedly in August, and I am so glad he's not here for this. It would have made it harder in many ways, although it would be also good to have someone to share this burden with. As it is, I dump it on my kids and their spouses. They willingly accept that but so much in their plates too with the death of their dad. All we can do is put one foot in front of the other and try to move forward.

I have nothing but admiration for those of you who are working and taking care of children through this. Trying to remind myself that my life is easy by comparison. Stay strong

bareclaws

Does anyone here suddenly find the taste of their regular water to be intolerable? I don't know if that's a thing with AC but it was with TCHP, for me. Just thought I'd mention that I discovered a couple of solutions. One is to add a splash of tart cherry juice or some other juice to the water, or even make ice cubes with it. The other is to try different brands of bottled water. I found that the high PH waters taste better. Worth the expense if it gets more fluids into me.

Naniisscared1

hi newt72 sent you a pm on facebook. Please add me to the secret group. Thanks naniisscared1 (Pandora).

Zolagirl

bare claws- so sorry for all you've endured the last few months, my heart is with you. At least you are treating yourself well with a new car 😉 did you find something you like?

I thought I had accepted to the fact I am going to lose my hair, and while it hasn't started coming out yet, (I'm day 9 of 1st AC Treatment) I woke up this morning to several red sore bumps on my scalp and had another fricken cry fest. I think we will all have to go through the emotions many times for all the weird (and distressing) things happening to our bodies. And while I am so fortunate to have a completely supportive and loving boyfriend, they are men and don't quite get the devastation of losing so much of what makes us a woman. He continues to tell me he will love me " hairless, boob less and even toothless" and I truly believe him, but it doesn't make it easier to accept. It's still a mourning process.

As far as drinking water, yes!!! Plain water has turned yucky to me, I do alot of flavored Vitamin water, and ginger ale too. I like the idea of cherry juice and may have to get some next time I'm in Trader Joe's. Since we got another round of snow last night, may not be anytime soon...lol.

Enjoy your Sunday.

tlgio17

Hi Newt72 and other ladies, I just sent a friend request to be added as well, thank you. (Traci Giorgio)--thank you for getting that all set up.  Much appreciated!

Getting Port Tues, and supposed to start first AC treatment on Thurs.  All my bloodwork came back that I was iron deficient and have anemia so hoping that doesn't change my plan. I have been fretting about chemo and just want to get it rolling so I can count down to the last one!

Hope everyone is having a good weekend,

Traci

Tere1

Hello,

I, too, am supposed to start chemo this January 2017. My only dilemma is that my MD has told me that due to my large breast, the pathologist cannot seem to find the cancer in the breast tissue that was removed during bilateral mastectomy on Dec 29th...

I had mammo, MRI, ultrasound and another mammo prior to having mastectomy to be sure I was + prior to making decision to have mastectomy (already was + BRCA). I was diagnosed with invasive ductal carcinoma with poorly differentiated cells.

Has anyone else had this experience? I am now reluctant to have chemo (that I was told I would need due to the type of cancer). But where did the cancer go??? Should I still go through with the chemo?

Confused!!!

showmama

What is the On Body you are speaking of? Do you mean the nuelesta?

showmama

newt72- I am sending you a fb request (Tammy Pettijohn)

showmama

Madofaith-

I received by port on Friday 1-6.  I was sore the day of and the next day but today I can hardly tell it is there.  I am confident it will make the treatments easier once I get started.

showmama

Serenity_now-

I do not have a start date yet but I am 46 and my MO prescribed AC +Taxol every 2 weeks.  I was not aware normally it was every three weeks so hoping it will go smoothly.  I had BMX 0n 12-6 and port placement on 1-6. So far so good.  Good luck Tuesday.  Let me know how it goes

jadisn

Hi could I please join the FB group?

Lilo244271

Bareclaw...I am so sad to hear about your husband. My hubby and I have been married for 32 years. And he is my rock. I struggle with the fact that my kids have to watch me during this process and will be sad. They are so very supportive though. Thank you for the water tip. I am a water drinker and it would horrible if I couldn't drink it anymore.

BG46TN..thabk you for confirming the hair lose. I am going to have to dig deep on that one.

Zolagirl..it is ok to be an emotional roller-coaster. We are going thru a very difficult journey and will have our ups and downs. Just go with the feelings at the time. Hair loss is definitely going to be a struggle for me. But, I will be saving lots of money by not going to the salon. Maybe I will put the $90 in a jar every 7 weeks and use it to celebrate when this is all over.

Tere1...I can't imagine what you must be feeling. Did you have a breast biopsy prior to your mx? That is so weird that they cant find it. BRCA+ is definitely something that would make your treatment more aggressive. I'm having a PET scan tomorrow and have been second guessing my chemo treatments prior to the reaults. The only thing keeping me moving forward is that my treatment plan matches everyone else's with a similar DX.

Showmama....most of us with your treatment plan are getting it every 2 weeks vs 3 weeks. Neulasta can be given as a shot the day after chemo or there is a thing that is put on your body that automatically injects you so you don't have to go back to the dr.

Tlgio47...we will be getting our port placement on the same day. I will be thinking and praying for you. My chemo starts 1/18.

Hugs and love everyone.

DiV

Hi ladies! I start chemo and radiation tomorrow. Anyone else doing chemo and radiation at the same time?

tlgio17

Hi Lilo,

Port Tuesday for both of us!! I will be thinking of you as well --my chemo is slightly ahead of you so I will let you know how mine goes and we can compare notes.

Take care!

Traci