Chemo in July 2015

6feetover

Twnkltoz: Good luck tomorrow! You'll be in my thoughts!

Peabrain

good luck Twinkle!!

@adarkadept - good to see you. How are you holding up?

@mdoc - the nose bleeds are from the chemo destroying the soft tissue, same for the stomach lining. I got prescription Nexium for the stomach. Use a OTC saline nose spray to moisten the lining and it will help. And keep a tissue handy for when you feel that quick trickle. No nose hairs to slow it down!

@batesburg - how are you doing with the AC? Almost done?

6feetover

Pea: Heya! I finished chemo (w00000000000t!!!) on November 17th. I'm currently working through the debilitating, lingering SEs before surgery, which I *just* officially learned a few minutes ago (I'm serious) will take place on December 16th. Holy moly! I opted for lumpectomy (including axillary node dissection *and* excision of some LCIS areas in my right breast) vs. BMX because I just can't handle any more than that right now. I'll be having rads for probably 6 weeks or so starting in January; I'm scheduled to go for my rads info/training next Monday, December 7th.

So tired... No one told me that cancer would be a full-time job! I dunno how in heck anyone works through this! There's no short-term disability funding here in CT, so my DH had to set up a GoFundMe campaign so that we could continue paying our bills. UGH!!!

I'm dealing with so much residual muscle/tendon pain, fatigue, and peripheral neuropathy that I can hardly walk or do much of anything. I've been promised that this will all improve, at some point. Damn well better!

SVGsurvive

Hi ladies & happy belated Thanksgiving. Wanted to post a quick note for anyone having surgery in January, I got sick of waiting for someone to start a thread so I did. Look for "January 2016 Surgeries" Topic under "Surgery - Before, During, and After". Please hop in!

adarkadaptedi, full time job indeed. I'm doing PT work throughout this, but at the expense of things I should be doing for me instead. GoFundMe is awesome, and I'm glad sites like that exist. Good luck!

Fluffy white hair growth and incessant fatigue FTW!

Twnkltoz

thanks all... Surgery went well and I'm getting ready to go home!

Peabrain

It's official. Wednesday was my last chemo treatment! Two TC treatments shy of the original goal, but I'll take it. I get to rest up for the remainder of the month and start rads in Jan

@adarkadept - congrats on getting off the chemo train! What should I expect for the fading (or not) of SEs?

Best of luck with the surgery!

I am glad that the GoFundMe site is working for you. I know some people work through this, but I have no idea how. I originally thought it would be a six month disruption and now it looks more like 9 or 10. And that's with no complications. Sheesh!

@twinkle - glad to hear you are headed home! Rest well, stay on top of the pain.

Bliss58

@Peabrain, congrats on no more chemo!! @Twinkltoz, glad to hear your surgery went well.

Best to all, and wishes for a good weekend, gotta get some sleep!

madrew

Hello ladies! It has been awhile since I've posted but I've checked in every single day. I finished chemo in September and finished radiation a few days ago. Radiation was easier than chemo. I did have a lot of redness, minimal pain and itching and eventually some peeling in my armpit. I do feel a bit tired and achy still-like my body had been through a lot over the last few months. I guess it has! I am now at the stage where every ache and pain makes me paranoid. I've been told that is quite normal. I think most of you could relate to my latest post in my blog Slightly Exaggerated. It's about the uncertainty that comes with a cancer diagnosis. I'm so grateful for all of you and your postings and will keep checking in periodically.

Batesburg

@ Peabrain- I have one more AC scheduled for Dec. 15th and then done!!! Cannot wait! My neuropathy in balls of my feet to tips of my toes persists. Gotta get to cleaner eating as one defense - going to buy fruits and veggies this weekend and other whole foods.

Everyone- I have to decide on lumpectomy vs. mastectomy.....how did you all decide???

Congrats to all who are blasting through chemo and moving onto next steps. This is definitely a year long journey of assault against these cancer cells. But, let the healing continue through each of the "phases". We are SUCH STRONG WOMEN!!!

Twnkltoz

@batesburg for me there was no option. Too high a risk of recurrence for a lumpectomy. However, risk to the other breast was not high, so I kept it and only removed the affected one.

The pain is not bad. I only take pain pills occasionally.

Bliss58

@batesburg, I was kind of holding out hope for lumpectomy, but I didn't have as good a response to chemo as my docs had hoped, so the BS recommended mastectomy. She said if she was in my shoes, she would make that election for herself because of risk of recurrence, so that was good enough for me. Also like Twinkltoz, I've opted to just have the UMX and hang on to my unaffected breast, but I've also decided not to have reconstruction.

Twinkltoz, are you opting for reconstruction? Just curious and not sure if I remember you saying.

Peabrain

@Batesburg -I was leaning towards lumpectomy until I got a positive BRCA result. I know they say the eventual outcomes are the same, No way I was going to risk going through all this again in another couple of years, especially with the genetic risks.

TMI alert: What is a chemo regimen without a trip to the ER? Made it all the way to the end of chemo and then wound up in the ER this morning with vomiting and diarrhea (quite a trick to manage both at the same time). Got antinausea drugs, tons of hydration and an ultrasound scan of my torso due to sharp pains and a lot of blood where it shouldn't be. Supposedly all tests are normal, so they sent me home and said to come back if anything got worse. I believe them...except for all that blood. Hoping I wake up tomorrow as my usual chemo fatigued self.

Bliss58

@Peabrain, that is such awful news about the ER and I'm so sorry for you. So frustrating to get all the way through and then.... I really hope this event is over for you. Best to you for a restful and uneventful Sunday!

Thunder7

Hi Batesburg, I feel for you and this decision. I had Invasive Lobular Carcinoma, with is always multifocal and comes back. I wanted to be out of the breast cancer business so I had the BMX. One of my girlfriends who also had ILC went for the lumpectomy. Because ILC has tentacles and is impossible to see (and does not show up on mammograms), her surgeon cut through the tumor. She then had to have a mastectomy on that breast. 6 years later she decided to have a prophylactic mastectomy on her other side because she did not like the way the natural breast looked with the reconstructed breast. In the prophylactic pathology they found 2 tumors in the "good" breast. So now she was going through this for a second time.

I am 55 so not sure what my decision would have been was I a lot younger. My former neighbor had DCIS, she had a lumpectomy/radiation and is 6 years out. She is terrified every 3 to 6 months when it is time for her mammograms.

It is such personal decision. I would recommend you weigh the pros and cons.

Love, and Hugs,

Thunder7

mdoc524

Oh No Peabrain - hope all OK and you are better now!! What is all the blood about - they could not give you a reason?? Hugs to you!! I have made 2 ER trips during this chemo regimen and do not want any more - not fun - and they always kept me - so glad you got to go home!!!

Batesburg - I agree with Thunder -it is such a personal decision when you are given the option. My BS said she could get it all with lumpectomy and my kids are under 10 and my decision was based solely on throwing everything I could at this so I will be here for my kids!!! Also even though BRCA negative I have strong breast and ovarian cancer on my Mom's side so that weighed in. Now when I was having initial discussions with my BS I was being told all things looked like Stage 1 small 1cm tumor.. after my BMX the pathology came back that the tumor was 3.5cm with 2 lymph nodes positive so I was so glad I had the BMX ... and I think my surgeon was too... I would list all pro's and con's and your feeling about both options to get it out of your head ... good luck - we are here for you!!

Twnkltoz - glad to hear you are home and surgery went well

madrew - so great to hear from you and glad you came thru both chemo and rads ... understand the anxiety and will probably feel the same

adarkadapted - hope your se's start to get better .. I have 4 treatments left and the neuropathy just started to really get worse - I had it the whole time but mild .. last few days left foot completely numb - can't feel it walking and tips of fingers turned into now whole fingers and hurts ... it really is alarming at times... hugs to you!!

SVGSurvive - good luck with last chemo this week!! Good for you on starting the surgery thread .. I was in the April/May Surgery Sisters Thread so you might want to read thru some of that for some tips or just ask if you need anything ..

Totally agree on how people work thru it - I gave it my best effort but after 2nd hospital stay MO and I both said it was time to stop working and put total focus on me .. I hope to go back and work thru RADs only if chemo SE's wear off by then.

Happy Sunday all!! I have 4 Taxol's left and if all goes as planned my last chemo is 1/2/16 - I probably shared this already - can you tell it is top in my mind - each minute that passes is a minute closer to finishing .. put a fork in me I am done..

Mary

Peabrain

I am feeling much better this morning! Got a good night's sleep (the usual up every two hours) and the bleeding has subsided. I think my intestinal lining was just stripped, kind of like my sinuses are. Today is a couch potato and football day.

Here's me yesterdayafter three liters of fluid and some painkillers.

Batesburg

Thanks for all who chimed in on lumpectomy vs. mastectomy. What I am reading today is the key for triple negative is to have radiation after breast conserving (lumpectomy) or mastectomy for optimal outcomes....so, I have a few more questions about this for my SO before I move forward on a serious and final decision. I am definitely only going to get surgery on the affected breast- at least I made that decision.

@ Peabrain- I am SO SORRY to hear about your ER visit. The first thing I thought of was what is going on with your spleen. As I am sure you know, neupogen and/or neulasta can cause your spleen to carry/hold more blood cells and expand and sometimes rupture. But, it sounds like you had that all looked at and it was negative.....so quite a mystery. Holding you up in prayer and goodness that you feel better ASAP. Please keep us posted.

Batesburg

@Peabrain- so glad you are feeling better!!! You are now done with your "obligatory because you were on nasty chemo hospital visit" - who doesn't make a pit stop to acute care when on chemotherapy like we were/are on??? Glad it was a short visit and you are back to full recovery mode!

Batesburg

@ Peabrain- another thing.....wonder if your platelets were low....not that you have to answer that.....but, at one point when I was inhabiting the hospital, my platelets were 14!!! Due to that lovely drug called Carboplatin!!!!

Batesburg

Love the pic, Peabrain!

Peabrain

@Batesburg - 14 is very impressive! it's funny how everyone gets hit slightly different by the drugs. My platelets are troopers, so although they were a tad low at times, they were never a concern. I don't think they dropped below 150 and mostly stayed in the 200s. Which was good because my sinuses got stripped so I have nosebleeds all the time and I need platelets to keep from looking like a rusty fire hydrant.

I didn't know that neupogen affected your spleen. They did a full ultrasound, but were mostly looking at my gallbladder and appendix given where I was hurting. All the inside parts looked okey dokey and they released me.

I am feeling much better today, less pain, no puke, no blood where it shouldn't be, etc.

If you mastectomy, the next set of decisions will be about nipples. Heads up:Just know that nipple sparing is a misleading name and you will lose sensation no matter what.

Twnkltoz

@peabrain love the pic! Hope you're doing ok.

@bjsmiller(I think?) I will have reconstruction, but they told me to wait until a year after radiation. So, roughly spring 2017. Good thing my surviving breast is small so I'm not way lopsided! Go back and tell that to my high school self who longed for bigger ones...

Now let's get the rest of you through your final chemos with little trouble!

Twnkltoz

on a side note, when I had surgery it took them three painful tries to get an IV started. I've never had trouble before, ever. They said chemo sometimes causes it because the veins are whacked.

RuthElizabeth

hi everyone. So much going on, I fell behind keeping up with everyone. I had my first follow up with surgeon since finishing chemo. He is easier to talk to than cancer doc. So I asked away.... I had double mastectomy in June, it went really well. Not much pain.... I have a lot of pain now in that area. Doc says I'm trying to do too much and it's muscle pain. Tylenol heels, but. Hate taking it every day. I am worried about the triple negative thing. No tests planned. More worry. Doc says I should be good for a year and then they will test and watch my liver, lungs and for bone cancer. What are my fellow triple negative friends being told? I have an appointment in Jan with the gyno about my overies. Doc says if he wants to remove them proactive, do it. And then, Monday, I go see the plastic surgeon for the first time. Curious about my options. Implant verses reconstruction. I'm worried about more time off work. Doc says he thinks I have just enough of extra skin, to get a small implant. I'm not a small person, so not sure that will work. help, all I see now is my big belly. I'd like to wait to make sure there is no more cancer first, but....

Pea brain, love love your hat!

I hope everyone is handling their SEs. Hang in there ladies. There is a light at the end of the tunnel.

I just contacted the tactile company about a lymphedema machine. The sleeves aren't working for me. I have grama upper arms and the sleeve cuts the circulation, and just plain ole hurts. Can't wear them to work. She is going to check with the insurance, and see what I can do. Therapist just insists on wearing a sleeve. Minor problems, but a pain in the butt....

Have a good week, everyone. Love and Peace to each and everyone of you. Time to get back to work. Ruth

Thunder7

Hi RuthElizabeth,

Solidea Sleeves

The link above is for a double sleeve that feels great and does not have the awful bands. My insurance would not pay for them because their compression is not as strong as the other sleeves. However, these are actually comfortable enough to wear!!

Thunder7

Peabrain

@Ruth - I still have rads to get through, so don't know what the follow up will be yet. I don't know how to say this gracefully, and we have sort of talked around it before, but I have noticed that your chemo regimen was the only triple neg I've seen on this forum that did not include some sort of Taxol chemo, including others with a Stage 1 diagnosis. Did you ever get a second opinion on this or an answer from your MOthat satisfied you on this question?

RuthElizabeth

pea brain, I did get a second opinion. I didn't have any lymph node involvement. My second opinion, said I had a choice of doing chemo or just doing nothing... Go figure. I know, it scares the crap out of me. No one seems to want to talk about the triple negative part. And my second opinion was at the Hershey Med.

RuthElizabeth

Thunder, I will check out the sleeves. I actually got a call from the lady at tactile company about the lymphedema machine, and she says my insurance will cover it. Now the rush to try to get it done before the end of the year, since deductible is met.... Again, time will tell.

Thanks everyone. Love and peace for a good week. Ruth

SVGsurvive

Last chemo was today!

I'm excited to join the cool kids who have already completed treatment, and to tell those who are still going (Mary, is it just you now? If so you have *all* of our good thoughts focused completely on ya!) that I experienced incredible adrenaline and happiness leading up to it. My SEs have never been so "manageable". I took selfies with some of my favorite infusion nurses, and they gave me a certificate signed by everyone which triggered some tears. While I'll never miss chemo, I will certainly miss my chemo family at the infusion center.

I asked them about some things we've been told to avoid during treatment, and when they can be resumed. Also checked on some SEs. FWIW, here's what I learned in case it helps anyone!

• Dentist appointment (flouride, xrays, cavities, etc.) - 6 weeks out
• Teeth whitening - 4-6 weeks out
• Dye hair - 4-6 weeks out
• Wax hair - 4-6 weeks out
• Hot tubs / warm bath - 1 week out
• Pap Smear - anytime (note: I didn't remember if this was to be avoided so I just wanted to make sure)
• "Normal" sensitivity to sun returns - no answer (I'll ask my MO)
• Neuropathy issues - varies: as we all likely know, this can never develop, or develop and stop right after treatment, or stay with us permanently. For extra security I plan to continue taking Glutamine powder & my acupuncture regimen for another several months.
• Feeling normal including chemo brain, muscle atrophy, etc. - varies anywhere from 6 weeks to 3 months to 6 months to 1-2 years!
• More intense exercise - anytime, ramp up as soon as you can, listen to your body
• Overall immune system risks (dietary restrictions, viruses & bacterial infections, avoiding toxic fumes, etc.) - varies, but each day after when you would've normally gotten your next treatment you will start to steadily improve. I'm going to ask my MO when I can get a final CBC & WBC Differential so we can confirm I'm back to normal. Regardless, I think we've all likely picked up some really good germ-avoiding habits we can retain forever!

Caveat: please be sure to check w/ your MO & team since we may have different timelines due to various circumstances & treatment plans!

mdoc524

Hello All - Happy Thursday - hugs to all still in chemo side effect fun!!

SVGSurvive - WooHoo for you on finishing - thanks so much for all the info - I will use yours as a guide to ask my MO when I finish!!

Ruth - so hope the lymphedema machine works out and my advice is to just be really straightforward with all your worries to your Doctors and tell them you want specific detail plan/answers on how to ensure Trip Negative concerns are met ... you may have done that - just keep pushing!! Hope you find an outlet for the anxiety - I know not easy.. hang in there !!

Peabrain - what an awesome pic .. Ha! Glad you are better .. I wish everyday could be a couch/football day!

I am hanging in there with Taxol #9 tomorrow. Neuropathy getting pretty bad; Legs feel so heavy; Horrible stomach pain all the time- MO said chemo rips bowel - yeah! My rash is back on both lower legs - ugh! Steroids kept it way for 2 weeks! Hot Flashes are every hour and just plain suck! And just soooo tired... Trying to get Christmas stuff done with two 9 Year olds that thankfully still believe .. our Elf apparently likes M&M's - Ha.. boys love this!! Now to top it!!

Have a great day

Mary