January 2013 chemo group

Denise-G

Skigirl72 - thank you so much about your kind words about my Blog.  I tried to document every feeling and event all through my Stage 3 breast cancer journey.  It is my passion to help others and bring them hope and encouragement.  Nothing in my life prepared me for all of this, so I wanted to help others...

the best way to navigate my Blog is to go through the categories or just work your way backward by dates.  It all started in October, 2011.   I wrote ALOT about chemotherapy from what to expect on the first infusion day, what to eat, side effects, hair falling it - you name it, I wrote about it.

Ladies Home Journal magazine even published one of my Blog articles.  They found me.  I was so honored.  But I am not trying to promote myself.  I truly am trying to help others...

denise4health.wordpress.com

russell33

Hi Sandra, thank you for the update. My chemo starts January 8, same regimen as you.  Getting very anxious.......Glad it hasn't been so bad for you.  Your in my thoughts.  Anne

Jalessi92

Lauren:

Hi! I started chemo in October 2012 with dose dense AC every two weeks for 4 cycles. I received a Neulasta shot the day after each AC chemo infusion, and want to let you know that I never experienced any pain afterwards. I don't want you to be fearful of Neulasta.



I found some posts that mentioned taking Claritin the day before, the day of, and for 5 days after receiving the Neulasta shot to avoid the bone pain. I did this and never had any bone pain! Take the regular Claritin ... I bought the generic version sold by Target. There is a clinical trial being conducted at the University of Vermont (http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01311336) to study this. You should check with your MO to see if s/he is okay with you trying Claritin first. My MO had not heard of the Claritin trial, but she said it was okay to try as it would do no harm.



There are some people who have tried Claritin and still had some bone pain, so you'll have to see how your body reacts. It's worth a try.

Lauren15

Thank J-  I read that, and that seems to be the consensus from others.  Very helpful to hear that it seems to really work.  My MO said he wants a very aggressive treatment - not sure what that means.  He's hopeful that since I'm triple negative that the chemo might shrink the tumor and in some cases they disappear.  Won't know for sure what I have or don't have until I get the further tests.  I'm glad the treatment for me is coming before the surgery.  My first surgeon I interviewed told me I definitely needed a mastectomy and then the sentinel node test.  The second surgeon actually said no surgery may be necessary.  What a difference.  I have a third opinion tomorrow even though my MO also said surgery may not be needed.  How are you doing with your treatments?  I noticed your triple positive.  That sounds good!

Anonymous

Lauren15 I am on the TAC regimen also, and the shot that follows the next day are referring to is probably the Neulasta. As Jalessi92 mentioned, taking Claritin has proven to help a lot of women.  My MO suggested I don't take it the first go so that I have a benchmark, but I'm not sure I want to "test" it out to see if I do or don't get the pain. Would rather just not experience it at all than to just wait and see.  I will also be working through it all, so we will pull each other through.  Ciao bella!

Fighter I believe most of the time the port is outpatient surgery. Sometimes it is done in the surgeons office, and ladies have reported it to be no big deal. I didn't want to know what was going on so I was put under "moonlight" sedation. The surgery was no big deal, for me it was coming out of the sedation that sucked big time! My port is in my arm, which is a little odd at times. My MO didn't like it being in my arm, but my surgeon prefers that so they are not adding more scars to the chest.

Lauren15

I hope I have the option of moonlight when I get the port put in.  I'm such a chicken.  I hated the needle biopsy.  The numbing shot hurt!  Nice to hear I have someone in the same boat as me and having to work Skimmommi.  The first quarter of the year is VERY BUSY, and I'm supposed to exhibit at many conferences.  I've already told them I can't travel.  However, I will be handling a lot of deadlines.  Has anyone been given any nutrition guidelines when you have cancer and when you are going thru chemo?  I'm hearing so many things, and now I'm really confused.

Anonymous

Changed my avatar to show a point of reference, and then when I get the pixie cut this week will upload a new pic. I'm still wavering on the short wig.

Sandra60

Hi Lauren - you will be in my thoughts and prayers for good test results this week ! You've come to the right place for remedies and support and we will help u through this ! You are on the right path educating yourself and with the excellent treatments they have now - you are going to be ok !!!!

Lauren15

Thanks Sandra.  I truly appreciate the support and prayers, as I will try to do the same for everyone.  I just read an article posted to my "articles" section here on "hopeful" information for triple negative cancers, and it didn't make me hopeful; just the opposite.  I learned more things I didn't know.  Anyone else here triple negative.  I've posted to that forum, but it's not very active, and it would be helpful to find someone in this group and go through it together as well.

Mterkelsen

Hi everyone! I start my chemo tx 1/4/13. Every 3 weeks, 4x, TC. Getting a little nervous since the week countdown started last Friday...I felt the exact same way one week before my DMX, and that was not nearly as bad as I thought it would be so hopefully the chemo will be the same! It's kinda crazy, but my main focus has been my hair...It's still long right now and I was planning on shaving my head around the 13th. I'm starting to wonder if I should get a real short cut this week now though, just in case it gets stringy & frail before then. Seems like most people do it right before their treatemt and I'm all about heading off the shock and discomfort of it coming out on its own. Any advice? I didn't have much "chemo ed". A nurse sat with me for about 10 mins and went over possible side effects and thats about it....

SherylB

Lauren15, welcome aboard. The N shot is neulasta, the chemo decreases your WBC (white blood cells) and depresses your immune system making you very susceptable to infection. The neulasta is given 24 hours after chemo to stimulate your bone marrow to produce WBCs. There is much evidence that taking Claritin (without the D) a day before and up to about 7 days after to help reduce the bone pain (which is due to the stimulation of bone marrow) really helps. Be sure to ask your medical oncologist if it is ok.

As a side note some people get neupogen rather than neulasta, only difference is neulasta is long acting and only need one shot after each chemo. Neupogen is a series of shots over a few days. Usually it is a cost issue and dependant on what insurance wants to pay for.

Hang tough, Sheryl

Lauren15

Thanks Sheryl!  I see that you are triple negative too. . . if you learn any good positive info, please send it my way, and I'll do the same :-)

DiZZyMom

Hi girls. I just joined this group and haven't spent a ton of time looking through it. So if my questions are better suited to another forum, kindly direct me to that ;-)  I am supposed to start chemo on Jan 3. My doctor recommends AC x four rounds then TH x four rounds then herceptin for a year. She's also giving me the choice of TCH x 6 rounds with the herceptin for a year. I saw a discussion on this here but the last post was in 2009 so I was looking for some current input.  I'm really leaning toward the TCH because of the shorter duration and the bad SEs with Adriamyacin (heart, leukemia & bone marrow failure). The BCIRG 06 study doesn't find any advantage in ACTH over TCH except in the case of TOPO IIIA co-amplified malignancies. This is where I am lost. Nothing in any of my pathology or other test results indicate this factor. I'll ask my doctor next week before I make my choice, but I was hoping somebody could help me figure this out a little sooner. Thanks!

Amrdbit

Hi Everyone, 

I am a newbie and old timer all at the same time. 18 years ago I had Hodgkins lymphoma and went through 5-6 months of chemo and 2 months of radiation. I always knew I was at an increased risk for BC b/c of where the radiation was done..... but since I am so many years out, I honestly never really thought it would happen. Well.... I was wrong. LOL! 

I was diagnosed in October when my beloved OB found a lump. I'm now 2 1/2 weeks post op from a double mast w/recon. I seem to be recouping rather quickly, and except for 1/2 a pain med that I reluctantly took, I've been doig well with Advil and Tylenol. (I hate pain meds b/c as soon as my head gets fuzzy, it makes me feel like I'm back in chemo. Thankfully I have a really high tolerance for pain. My TE's are doing well, and I think I'm getting my first fill this thursday. Minus the occational burning sensation, they don't seem to hurt very much. All seemed to be going well until I went to my new oncologists office. 

My BS and PS and even the Dr who did my biopsy were all on the fence about whether or not they thought I would have to do preventative chemo this time around. My lump was small, my margins were clean and my lymph nodes were clear. Now, post mastectomy surgery I am cancer free. However..... the news from my new onc. is that I now have a 20% chance of reoccurance and 4 1/2 months (6 treatments) of preventative chemo will bring that number down to 10%. I am very into the natural way of doing things. My husband, 2 teenage boys and I are very connceted into accupuncture, juicing, clean eating (for the most part..... everyone needs a cheat now and then) and we love our natural path. I am hoping that all of this preventative "stuff" will help my body ge through chemo easier then the last time I went through it. (But.... back then, my husband and I were really young and thought that a bowl of tater tots w/ ketchup counted as 2 veggetables. LOL) 

The part of this that bothers me the most is the hair loss. I do not make a pretty bald woman. Argh. My husband says I'm sexy bald....but I don't believe it for a second. He is very sweet though. I'm having a wig party next week. A group of girlfriends and I are going out to lunch and then to the wig store my onc recommended. Might as well try to have a little fun with this... even if inside the whole damn thing pisses me off. In the last 2 weeks I've lost 2 girlfriends to breast cancer, so I just keep telling myself that hair loss is temporary and 4 1/2 months is just a little blip in the story of my life. But.... is it April yet? JK! Lot's of New Year's love to y'all!! 

Bryona

Wow, we have a lot of new people. Ciao, bellas! (And damn you, cancer, for putting so many of us through this!)

Sandra, thanks for the update. It's great that you're craving water; gotta wash those toxins out! I hope you were able to get some good sleep and are starting to level out after the steroid crazies. ((hugs))

DiZZy, you should post anything you want to here. We're all in this together. For your question about AC-TH vs. TCH, though, try checking out the Triple Positive Group in the HER2 Positive forum http://community.breastcancer.org/forum/80/topic/764183?page=467#idx_13995. It's a really active group, and I asked a similar question a couple of days ago. They had loads of experience and so much to say. I, too, am leaning towards TCH, but meeting with my MO Jan. 10, so no decisions until then. If you don't mind sharing, what stage and grade are you? That might also matter to your MO; it seems that even some of those who strongly prefer TCH still prefer anthracylines for locally advanced agressive disease...

Lauren, try not to make yourself crazy about the PET scan. Yes, it could raise your stage, but more likely it will reassure you that the beast hasn't travelled. I've talked to a few people who never had full-body scans done, and that little uncertainty really weighs on some of them. As for the LVI thing, I have that too. I think they don't include it in staging because they are still arguing about how much it independently affects prognosis. For now, though, staging is based entirely on tumor, lymph nodes, and metastases... but your treatment will probably take the LVI into account. Anyway, chemo should kick its butt! Oh, and if you're looking for TN support, you might try this thread: http://community.breastcancer.org/forum/72/topic/752075?page=650#idx_19497. It looks like the triple negative ladies all meet here; there are nearly 20,000 posts! Just read the last couple of pages and dive in.

Mterkelsen, it's awful that you've had so little information about chemo, but you'll find tons of it here! Lots of ladies go with the short hair first to prepare, but some don't. Some shave it all off when they feel it start to go; some don't. I've also heard several people talk about cold caps to prevent hair loss. I think there's a whole thread just about hair in this forum, and a separate one about cold caps. My understanding is that the serious hair loss generally doesn't kick in until about 18 days after first treatment, so you have a little bit of time to decide what works for you. Just remember: We're here for you, whatever you decide!

Amrdbit, so sorry you're having to deal with this again, but bless your sweet husband for saying the right things! You know, if you have several docs on the fence and only one on the side you don't want to be on, you could get a second opinion. Or, if you just want to get through this and be DONE with it, check out that cold cap thread. I swear I'm not trying to sell this -- I'm going for bald, myself -- but I keep hearing women talk about it, and maybe it will help you. When do you start your tx?

Wow. I talk a LOT!

Sandra60

Bryona - you certainly are prolific - thank u for all your efforts with this group ! We will get though this together !!



Welcome ( if u can call it that ). Dizzy and mterkelson - the ladies on this thread are so helpful - you've come to the right place !



Washed my mane- blow dried and even used my flat iron - I'm ready to go see Lincoln with dh - will wear gloves and try to stay away from people but need to get out of the house !!!

I think I will just leave my hair alone until it falls out - they say cutting it weakens it some - read that on the penguin cold cap website ! It I'll come out eventually .....



Anyone taking an antacid like nexium ? Seems like I may be needing that .....

Amrdbit

Bryona, 

I jsut heard of the cold cap the other day for the first time. A woman that works with my mom sent me an article. I'm def going to research it more. I wasn't aware that there was a thread about it, so thank you!! I will definitely check it out! Yeah, my husband is great. We've been married for coming up on 19 years and the last time I went through this shit we had only been married for 10 months. I felt like a lemon, like he should have been able to return me or something... kind of like a used car. LOL! Luckily his attitude was that we would get through it together... and then anything else that ever came out way to deal with would be easy in comparison. He also wanted to shave his head with me.... but one of us had to have hair, so I wouldn't let him.  

As for my Dr's. The only reason they were on the fence was that i was diagnosed as stage 1A. It was all very beginning stages. (Thank goodness) However, they couldn't make a decision until they saw the pathology reports that were done during surgery. Once they saw the reports.... the BS, the PS and my Onc all agreedon preventative chemo. Otherwise I for sure would have gotten a 2nd opinion. Sigh. 

My port will go back in in 1-2 weeks and then chemo will start soon after that. So..... not the January I had planned..... but summer is jsut around the corner. right? LOL!Whe do you start? And no..... you don't talk a lot. You talk just the right amount and have wonderful things to add to the thread. So keep talking. 

It's great to meet you.... although I wish under different cercumstances. Deb

DiZZyMom

Hi Bryona, I'm stage IIIb, grade 3. I put my diagnoses as public in my profile, but I see it's not showing up. Did I mention I'm new here ;-) Oh there it is!

Lauren15

Thanks Bryona for that wonderful response.  We are all not happy to be here and happy we're here all together at the same time.  Positive energy is SO IMPORTANT!!!

SherylB

Lauren15, I had general anesthesia when my port was placed on Friday. It was done outpatient but in the OR and I went home 2 hours later. Friday and Saturday were a piece of cake, but I think whatever they gave me in OR wore off early this am. Woke with lots of swelling and pain. I wish I had used ice when I first got home but since I wasn't hurting I didn't. It would have prevented some of the swelling I now have. Ice has suddenly became my new best friend. Kinda funny, using ice on right for port, and heat on left for swelling from the lumpectomy. Crazy!

Skimommi, if your port is in your arm where do they take your blood pressure. I read about placing in arm before I had mine placed in chest but what I read is that they don't want blood pressure taken in that arm even below the port and can't use my cancer arm. Just curious going forward if I ever have to have another one put it. One thing I know for sure is that when we read we can find just as many opionions/research for something as against it.

Hang tough, Sheryl

Lauren15

Thanks Sheryl - good to know.  I'll ice immediately, and I'll ask where they are putting it.  First step is to pray for a clean PET report, BRCA, then MRI.  So many hurdles to jump - one step at a time . . . My husband is going to cut my hair short when I start chemo.  He has many clients who were traumatized when the clumps started coming out.  I need to find a good place for a wig too.  So much to look forward to : - ) -- It will keep me from shopping and wanting a vacation.  I may even get free plastic surgery.  Need to look at the positives.  LOL

Amrdbit

Lauren15, I'll be praying for positive test results for you!!! Sending hugs your way!

I am so totally interested hearing about having a port in your arm. Where in your arm? Has anyone heard if the innitial pain is less/more/same as having it in your chest? I had my last one 18 years ago in my chest..... but with all that my poor "girls" have been through...... it might not be a bad idea to consider placing it somewhere else. Any thoughts?

And.... I'll be finding out tomorrow my schedule for port placement and beg of chemo. My onc had to do a double check on the adriamycin. Apparently (if I'm getting the med right) there is a cap on how much you can have and I had it the first time around. Even though it was so long ago.... she thinks she needs to substitute a different drug for that one..... thus she needed an extra day to figure it out and get my all the old paperwork. I did my chemo the first time around in Raleigh NC and now I am in Dallas. 

Deb

Fighter69

I have been reading and reading and just want to know what types of vitamins can you take for those that are in chemo as the article states that vit A,C,E and selenium can increase the spread of cancer . The vit reccomended is vit D well more reading is needed .

Fighter

Leamitch7

I'm new here too, been in a bit if denial. Not that I have cancer or starting chemo. I deal with negative things as they come. I don't even know right now what time my chemo starts on Friday, but I know I'll be there. No wig shopping yet. I think I am a wig girl though, so I need to work on getting one. I'm really happy I found you all, I'm 3000 miles from home, stuck in a frozen wasteland, lol. My ex husband takes me to most of my treatments. Weird!!! I have a 13 year old daughter. The past 3 years have been rough. Lost my MIL, ex had an affair, lost our home, divorce, major spinal surgery for my DD, and just when I thought I had it all figured out dx with BC. Not happy we're here but, looking forward to supporting you all:)

Bryona

Leamitch, I'm sorry you've had such a rough time. I hope your DD is doing well, and that you find your treatment as painless as possible. You said you're 3000 miles from home, so I'm guessing you're a west coast girl. I liked NH (well, I loved the moose!), but it must be tough to be far from home, especially when you have to deal with crap like this. I hope you have some good support near you. (Besides the moose, of course...) Ciao, bella!

Deb, I've heard that about the lifetime limit on adriamycin. Good thing they were paying attention and noticed the history! I guess that's why the paperwork always takes such a long time: gotta make sure not to miss anything. Even so, I think you'll probably start tx before me. I'm meeting with MO Jan. 10, and the first round is supposed to be sometime the following week.

Lauren, awesome signature about the rocking chair, and I love your bright sides. My sister and husband are both "disappointed" that I "only" had a lumpectomy -- they were hoping to be fat donors! LOL, as if I don't have any of my own.

Fighter, you might want to ask you MO about vitamins, and about nutrition in general. I think there may be some details that relate to specific chemo regimens, and maybe to specific cancer traits. Be careful about researching online. There's lots of good information out there, but there's all kinds of nonsense, too, and plenty of confusion. The nutritionist at my cancer center said the best thing I could do is justto  eat a balanced diet (lots of fruits and veggies, not too much red meat, limited salt and refined sugar, etc.--all the things the doctors always say we should alll do!). I've never heard that vitamins A, C, or E cause cancer to spread, and I'd hate for you to become malnourished because of bad advice you found online.

(((Hugs))) to everyone!

Amrdbit

Bryona, it looks like we are going to be very close in start dates. Ill know more tomorrow, but it looks like within a week ill have the port and then start chemo within a few days or a week after that. We might be starting on the same day. Who knows? It's so good to have people to go thru this journey with me.

Anonymous

Amrdbit, Mterkelsen, Leamitch7, Leamitch7 Ciao Bellas!

Wow Lea, this past year has been quite a trial for you. Even though the road ahead will be tough we must think of it as a new beginning - and summer will be a blast!

Mterkelsen I am starting one day before you, and everyone says you can pretty much absolutely count on 14 days following the first treatment to start loosing your hair. Even the lady at the wig shop asked when I start chemo, then counted out and said I should come back about the 17th because that is when I will start the shed (and will be feeling a little better by then). Depending on how long you want to be short, you might count on that timing. I've always had long hair too, but thinking of doing a pixie cut this weekend so I have two weeks to get over the shock of it all being gone.

As for the arm port, it is on the inside, upper arm.  You know, in that nice jiggly part. LOL  I forget it is there most of the time, expect for occassionally when my purse catches it, or when I'm putting groceries in the back of my truck. I never had any pain or issues following surgery either.  They take blood pressure on the port side, on the lower part of my arm. It seems to work just fine. Only down side I can think of is that I will certainly have to wear short sleeves to the infusion center. So, bring on the extra warm blankets. Oh, and when I do wear short sleeves and lift my arm for something I just get the odd stare at it sometimes.

Sheryl you are so right about finding opinions that are strong on both sides for everything. I've been hearing/reading a lot about the differing opinions when it comes to radiation on young BC patients.

Fighter I am so confused on the whole vitamin thing now. Part of it stems from the surgery though, because as you well know you have to stop everything for surgery. Then it seems like you can't take this or that during fills if you have expanders. I've heard bad things about vitamin c on chemo. Although when I asked the MO nurses they said drinking an emergen-c wouldn't hurt, but just not to overdo it. I figure maybe it is just as well to avoid altogether. Onc said to get all your vitamins from fruits and veggies, but if we don't feel like eating how well will that work? And I feel so sluggish without my vit's. Am taking a vit d that the onc wanted me on, and won't give up my mood balancer. It is just herbs, even though onc probably wouldn't highly approve of it either. I've debated on meeting with a herb and supplemental consultant at the hospital. Just another appt to add to the list of other medical appointments though. I'd really like to find a B-complex, but many have added C and E, which now I'm afraid of.

Amrdbit

Skimommi,

I did the same thing with my hair last time I went thru this. My hair has always been pretty long. (and it is again now) Last time before I started losing my hair, I cut it to a pixie length. I remember the day it started falling out. We were at a movie and when we came out if the theater I looked down at my white tee shirt and it was covered with pieces of hair. It never clumped as it fell out, it was more like lots of pieces falling out at a time. It was kind of Strage. Well, my hair is long again now and I think I'm going to go with a different plan this time. When my hair starts to fall out, I think I'm going to give my teenaged boys a razor and have them shave it. They can make stripes, a Mohawk and have fun with it. Then shave it all off and ill wear my wig. Silly, I know but I figure you gotta be able to laugh when life throws u a curve ball. This is just a blip on our life stories.... How different things will be New Years Eve 2014. Smile! (Don't get me wrong. I'm horrified and really sad at having to lose my hair again.... But since apparently it's going to happen, I am trying to get thru it smiling the best I can.)

Leamitch7

Bryona, DD is a beautiful sweet girl, that doesn't show her emotions. I worry for her all the time. I am a West Coast girl, longing for the warm sun of So Cal. But, I'm hoping to relocate to Seattle area as soon as feasible. My brother lives there & my parents will be retiring there shortly. I've been here in NH 14 yrs and never seen a moose.Not a single one.


skimommi, my test by fire actually started 4 yrs ago. I learned I was stronger then I ever knew. It's given me strength to fight now. Which is good cuz' I'm scared. I can't wait till summer!

Sandra60

Wow - finally for my heartburn under control . I re- read some of the other posts about heartburn and will ask my onc for a previcid prescription tomorrow!! I had some over the counter acid reducers and they've helped ! To all u doing TC in January I would recommend preventative hear burn control !!!