Starting Chemo March 2015

ninjamary

bekah - omg... your hair is coming in fast! That is awesome.

Leighrh

Just a little positive this morning.......  A young gal that I am friends with on FB.. found her on instagram and we chat every now and then..... She is 33 with Stage 3 BC.  She had a double MX and did 4 rounds of AC and 12 weekly Taxol with Carboplatin(sp).  After her MX she had a tumor on her chest wall that was inoperable.  She finished Chemo and had her PET scan...... The Tumor was GONE!!!! She has radiation to do and she has reconstruction as well but she is NED as of now!! So........ even though all this sucks ass..... IT WORKS!!!!!  I struggle with chemo because my tumor is gone and it's tough to wrap my brain around doing all this for a just in case so it makes me feel good that at least I know it works if there is a rouge tumor wantabe floating around   

Jackbirdie

Leigh- that's not a little positive. That's HUGE! So happy for your friend, you, and all of us who can take heart at such wonderful news.

Here are my first strawberries of the season. My BFF planted them when she came to walk me through first chemo. She was sure they wouldn't come to " fruition" haha.

Trvler

Phew. lol. That's funny, Katy.

Happy birthday, Maryellen. And MANY MORE!!!

Jackbirdie

the purring is deafening. I'd forgotten what a comforting sound it is.

rleepac

Day before Taxol/Herceptin #7 and I've still got residual SEs from #6. Daily diarrhea and constant (although not severe) nausea, mouth sores, and fatigue, my fingertips and toes are starting to get a little tingly/numb feeling and food still doesn't taste good. I know I should be so excited that I'm past the half-way mark for this last leg of chemo but I'm still very discouraged.

Doesn't help that DH has been grumpy too. Probably because the sex has stopped. It just hurts too much We just celebrated our 18 yr anniversary on Sunday so 'coconut oiled it up' and went for it anyway. I spent the next 30-45 min in a hot bath to ease the pain. Now he doesn't want to touch me because he doesn't want to hurt me and doesn't want pity sex. This is very disturbing! I want my sex life back!!!

Sigh...back to the spa tomorrow

Bekah

molly1976

Bekah, I'm having the same issue with pain. Does this go away once we're through chemo? Anyone know?

Italychick

Ok so far outing myself at work has been no big deal. One guy asked me if I was still in active treatment, and then told me they went through it all with their 18 year old daughter. She has leukemia and had to do chemo, including Adriamycin, for 3 and 1/2 years when she was four years old, with annual follow-ups. I was okay with that approach.

Second person said her mother-in-law is going through chemo for leukemia, and asked me if I could point her to where I got my do rag/skull cap. Then she said you seem to be doing very well, I hope that is truly the case. I was okay with that approach too.

So far, so good. And fuck that wig! I am never ever wearing it again. (I hope).

Trvler

I am with you about the sex. We tried last weekend and it hurt. I saw a woman talking about how great her sex life in the sex section was so I PMed her and asked about it. She gave me some nonsense about doing things to make yourself feel sexy. It's NOT mental. IT's PHYSICAL.

Trvler

Can ANYONE answer what is causing the bone pain? Is it the taxol or the steroids? I ask because I had far less of it #2 and I had the steroid cut down so they cut it again this week and I am wondering if that will make it even less.

SpecialK

Bone pain is a side effect of Taxol and Taxotere.  If you are receiving Neulasta or Neupogen you can also have additional, or different, bone pain from that.  If allowed, many found more relief from Aleve than from regular pain meds.  Just be careful to put something in your stomach when you take it - I found it to be a bit harsh, and your poor tummies are torn up from chemo.

Trvler - can't remember if you mentioned 3D tats from Vinnie - important to know that he has a massive waiting list - so plan ahead.

You ladies are doing great  - hang in there!  For those recently done, or about to be, many of us have found that the 6 week mark PFC is when you see a significant increase in feeling like your old self.  You all have been through hell and back - it can take just as long to feel good again as it took to feel this bad - so try not to be too impatient, or feel that you are not returning to normal fast enough - it is a process.

On the hair front - this is a good thread linked below.  It took me about three months before I went without a wig and looked semi-normal.  The focus shifts after chemo to "Hair Watch 2015" - we all did it after we were done.

https://community.breastcancer.org/forum/69/topic/707348?page=730#post_4413459

Here is someone from the Triple Pos thread's hair timeline:

Click on lago's post from June 23, on the linky.  Look for the dates (very tiny) in the corner of each photo:

https://community.breastcancer.org/forum/69/topic/707348?page=323#post_2465401

Trvler

Thanks, K! I wasn't having much bone pain and even less this week so I thought it might be because they decreased the steroid.

I am scheduled for recon on Sept 1 and supposed to have rads after that. How long out should I schedule the tats?

ninjamary

Sex....I have no desire. None. We've done it 2x since my DX and I'm not there mentally. Maybe when this is over I'll stop at the sex shop or something, but the last two times were very forced and not enjoyable.

SpecialK

Trvler - I have read he has at least a six month wait. I also believe that I have read that you shouldn't do them right away anyway because you need to allow time for physical change so that placement is accurate. If you are doing DIEP at NOLA the ladies on the DIEP thread can advise how long they waited to be able to have nips, and then how long it took them to book w/ Vinnie. I have also read that he is spending more time in New Orleans and less in Maryland, but has trained the people at his shop there in his technique.

BBwithBC45

SpecialK, thank you so much for letting us know about average 6 weeks to get better. I'm 3 weeks PFC and I was telling my boss today that I was disappointed, because I thought I would feel much better by now. Now I know I just need to be more patient

Meme117

Thanks for the birthday wishes. I am so grateful to be celebrating another year, I just wish I was younger😀 maybe in my 20s no 30s.

I was able to take a good walk today so feeling much better and now so tired. Gonna enjoy the next few good days before #5. Surgery scheduled for 8/4, BS mentioned maybe a reduction in the other breast and a lift. What? I want the least amount of surgery as possible.

Carrie I just mentioned nail pain to my MO. I have one feels bruised but just looks little red. She said keep nails short and be careful with them.

Bekah hair looks good, good luck tomorrow. So happy for the chicks.

Theresa sounds like a nice day at work. How's your hand/feet issues? Did you have pain or just tingling? My left hand, not fingers, has started hurting tonight, painful. Not sure if related to chemo.

SpecialK

BB - you're welcome - sometimes it seems that just as we have questions going into chemo, we have questions coming out too!

On the Hair Watch 2015 - I found that my hair grew back more on the sides and back first - all the places I could not see as easily when looking straight on in the mirror.  So, of course I was panicked that it wasn't growing.  My family kept running around behind me and looking and reporting that, yes, there was hair.  The top seems to fill in last, so don't be nervous about that.  It is a good idea to take pictures weekly - it helps you see that there really is growth.

eheinrich

Feeling good. Starting a full-time job search. Making pickles tonight - sooooo many cucumbers!!!

Bekah I wish my hair was a color. Mine looks like tiny baby chick fuzz. I tried to take pics but you just can't see it.

Sex....I have no data to contribute. I wish I did. I feel so undesirable. Which is also the feedback I get. DH has made no moves on me in quite some time. We used to have "congagle (ugh sp? sound it out ladies) visits, but my advances have gone nowhere the last few times so I stopped making them.....blech. Even if it didn't work it would be nice to have someone want to. although I absolutely understand you ladies w issues. I have been on various psych meds that erase all desire and ability so I'm totally not making light, just sharing. Been feeling ugly & the other stuff just reinforces....

Italychick

Maryellen, still there. Feet were burning today at work and also ankles. Leg pain woke me up in the middle of the night. Diarrhea in the middle of the night, and I barely made the drive home from work without pooping myself. Fingertips still can't feel water temperature. I hope I haven't jacked my body up and it can recover. I wasn't able to do a bike ride tonight because I was afraid of having to squat on the side of the road in front of my boss. Gonna try a ride with my husband tomorrow where there are bathrooms along the way just in case.

I'm so damn tired of this right now. Cancer sucks. I never even took Advil before this process. I can exercise, and do everything I can to try to maintain my body integrity, but there really isn't anything I can do about what the chemo is doing to my legs, feet and hands. So frustrating! I don't really feel that bad except for burning feet, legs and numb fingertips. I'm pretty sure the diarrhea is unrelated since my husband has it too. At least I hope.

Gut pain is minimal unless I eat something spicy, so avoiding spicy food for now.

MUGA scan tomorrow to make sure my ejection fraction hasn't been compromised from Herceptin.

Jackbirdie

night night everyone

slothabouttown

Jack and Tutti are on their way to being bffs! That is so sweet and I'm so happy for the three of you!

Happy birthday Maryellen, I'm a little late getting my wishes in but I actually had a night out as opposed to staying home watching my hair grow. Or not grow. I have the baby fuzz too so tonight I picked up some women's rogaine and the nizoral shampoo they talk about on the hair thread. What the hell, might as well throw a couple more chemicals into the mix, right? Also found the calendula cream, it smells so good!

You want to talk about sexy? I'm telling you this baby bird head I've got going on right now is anything but. Patience, patience I know. Goodnight and I hope everyone has a great day tomorrow, with no one pooping their pants or what not. Theresa, what's an ejection fraction!? That's a new one to me...

Trvler

I was wondering that, too.

Theresa: I am sorry you are feeling crappy. When are you done? I was hoping all of your exercise was the magic bullet.

That's not the kitten on Jack, right? The picture is kind of fuzzy.

Eileen; I am sorry your DH isn't making you feel wanted. That's got to hurt.

With me it's not desire. I feel desire. It just hurts too much.

So yesterday was the last day of school and we went out to dinner. We went to a Thai place and DD got this rather large bowl of seafood soup and had two huge glasses of water. I expected she would be up all night peeing, which she still feels she needs to come and wake me up for, but she woke me up at 11:30 and then again at 3 and said she didn't feel good. So she got in bed with me and I was worried the whole time she would throw up on me. Finally, around 4 I sent her back to bed but of course I laid there awake forever. Ugh. Just ONE good nights sleep would be fine.

Trvler

Special: I am curious. Do you read all the threads and share your knowledge like you do with us? I can't tell you how much your information is helping and appreciated!

Trvler

Oh, I forgot to tell you guys this. I was at the MO the other day and she was examining me. I was lamenting that my cancer was still there. She asked if I could feel the lump still. I said no but I still felt the bee sting pain. Do you know what she said? You guessed it. Cancer doesn't hurt. AHHHHHHHHH!!!!!

ninjamary

Allison - omg...I heard the same thing from my MO office. Her PA told me that when I asked if I would need pain killers while on chemo. Now mind you I had to sign off on a drug questionaire (e.g. they were allowed to blood test to me to see if I was taking too many or selling my pharmacuticals) ARGH to your AHHHHHHHHHHHHH. lol

SpecialK

sloth - I used Bosley products - somewhat less scary chemicals.  It is a 4-step, shampoo, conditioner, and two leave on things.

Ejection fraction measures pumping capability.  Herceptin can cause Congestive Heart Failure (CHF), which is usually temporary, but not always.  Most MO do quarterly MUGA or echocardiograms to measure the EF - it is a percentage.  They do not want to see a drop below 50 as a measurement, or a 10 point drop between quarterly tests, or a total 10% drop.  All of those things buy you a cease and desist on Herceptin and a trip to the cardiologist.  Some of you had these tests prior to receiving Adriamycin also, also known for cardiac risk, but the damage is more likely to be permanent.

Trvler - I do zoom around threads on BCO but I seem to visit one chemo thread a year and return to it regularly answer questions.  You guys ask questions that I can answer, and I like how bonded you all are and how you have maintained your sense of humor, so I visit.  I hope you all don't mind.  I have my own chemo thread from Feb '11, Triple Pos, TCH, and a few others that I post on regularly, other wise I just check the active topics.  I have also posted regularly on the TE Trouble thread because I have had such an extensive surgical experience.  If I am in a waiting room, or stuck at a red light I check stuff on my phone, and I pop onto my desktop throughout the day.  I have met at least 20 BCO members in person - we have an active Tampa group, and I have gotten together with several ladies in California when I have traveled home, and also some in Washington, D.C. when I went there frequently for the Her2+ vaccine trial I am on.  I have had 100% awesome get togethers with BCO ladies - as you know, we all get it, and there is nothing like that type of understanding - it goes a long way. 

Italy - try not to get too worried about the neuropathy - it generally does fade, but it takes time.  Did you take L-Glutamine and B6?  If not, you might want to start now.  I found that I had some light tingling and numbness in fingertips, tongue (weird!) and feet after each tx, but it got worse the farther I went.  It did resolve before the next infusion until I reached #5, then it stayed.  It took about 3-4 months PFC for it to go away, but it did.

 

 

molly1976

My MO does not do any heart tests for Herceptin unless you experience symptoms. He said he knows he's an outlier on this and that he'll do them if I really want to, but I guess it makes sense that if I feel fine I'm probably fine.

Jackbirdie

Special- Of course we don't mind! You have been so helpful. And like a guardian angel.

Allison, sorry that was a terrible pic but I couldn't resist posting because it was Tutti curled up right ontop of Jack and he was LETTING HER!!., haha.

SpecialK

jackbirdie - thanks!  That is my goal - a pay it forward thing.  Also, I hope you didn't think I was being too harsh or opinionated when I advocated for not doing six TC, and stopping where you were - it is because I am worried about you - not statistics or probababilities, or anything else, just you.  I hated to see you suffering.  Love that Jack and Tutti are striking up a friendship, or at least a tolerance for the moment that will become a friendship, but Jack is the bomb, so I didn't doubt that he would accommodate.  I think he wants what you want, so there you go!

BBwithBC45

Molly, I read that you don't always get symptoms with the lowered ejection fraction.

I'm getting an echo every 3 months. In fact the second one was at about 2 1/2 months because my PCP wanted me to have it prior to my revision surgery rather than after.