Podcast: Hope After a Triple-Negative Diagnosis

FernMF

QUESTION:  Yesterday a slightly inconvenient rash started - side of neck; lower belly; at panty-line between my legs - itches like poison ivy - incidiously!, seems to be spreading - it doesn't LOOK like poison ivy and I haven't been in the weeds or outdoors . . . last night 2 benedryl's and a sleeping pill later after a colliodal oatmeal bath and reading for 4 hours, I finally slept for 3 hours - I'm at work today - no problems (except itching) . . . IS THIS A SYMPTOM OF ONE OF THE CHEMO DRUGS?  Anyone have similar experience?  I showed the oncologist the rash yesterday, he was NOT impressed - no "biggie" - actually wasn't a biggie to me either until it kept me awake all night.  THANKS for any opinions.

Marianne52

Hi,

I started with the same rash on Sunday. Same thing, saw the Doctor on Monday andno big deal to her either. She told me to take Benadryl and use some Hydrocortisone Cream. I have had 5 weekly Chemo treatments so far. Marianne

FernMF

Marianne52 - did it ever let up?  What helped you the most?

I have no temperature - the insistant, incedious rash has tripled - covering about 1/2 my abdomen and "down there", my neck and arm pit to back on the left side . . . this is "just itching" . . . BUT OMG it drives me crazy . . . so, if "this is as bad as it gets" I can get through this.  Oncologist on call (no my doctor) said treat with Prednisone - so, to sooth an allergic reaction I'm pumped for of steroids about the time I think I finally got over the 28 mg of steroid that got last week's treatment started . . . Aveena Colloidal Bath here I come.  It is helpful for me to go about my normal life, and I am very thankful that I have a job to go to, and stuff to fill my day so that I don't dwell on myself.  Tonight started church choir practice for the fall season, I am a pianist and have played/sung/lead music for 44 years . . . so, this is a blessing to me - went, sang, played, met with friends I haven't seen all summer and enjoyed myself - hopefully now, after 3 hours sleep total last night, and 1 benedryl, 6 prednisones, 1 sleeping pill, I'm gonna get some rest.  THANKS so VERY MUCH for answering my questions early - it helped to talk to the doctor with what you all thought was the answer - made me "sound" more intelligent and less of a basket case.  Talk with you all tomorrow . . . I am "hopefully" going to sleep here real soon.

jillj

Sometimes the chemo nurses are much more helpful about stuff like rashes than the onco is.  You might want to talk to your nurse about it--I found they know better how to treat side effects and understand how annoying they can be!

FernMF

THANKS ALL.

Worked all day today - I'm high on prednisone for the rash (that is still there, but NOT itching).  I'm the road runner and the energizer bunny in one -  BEEPPPP BEEPPPPP.

Finally contacted the after hours service and talked to an oncologist I have not met - he thought the rash could be related to the chemo (DUH?) and that prednisone was the only way to go.  So I doubled the antihistamine AND took a sleeping pill - so I got a good nights rest.  Good thing - today has been full speed here at work.

Now, it's come to my mind that side effects from Chemo "might" hit us at those physical points where we have previous conditions; i.e.  I have skin problems, I'm highly allergic to poison ivy and never touch the stuff, but come down with 1-2-3-4 times per year where I have to take prednisone. (AND, got a S/E skin rash)  Also, I have highly myopic eyes with reading lenses in my -18 lenses plus prisms.  The S/E on day 3 and 4 after chemo was double vision.  Is that what you all have experienced?  THANKS!!! 

caperry79

I was a big baby about shots! I hate needles so my Medi-port was my friend. The Neulasta made me a bit sore the day after, but that was it. Hope you continue to do well. Oh-getting it in your stomach is no easier!

caperry79

@the5owens-I am working on almost 2 years since my diagnosis. I had neo-adjuvant chemo (8 rounds) then bilateral mastectomy with reconstruction. I have no evidence of disease! Liife is good and God is great! You can do this!!

the5owens

Ok help me!! Went to see surgeon yesterday. She says that I will probably only need a lumpectomy. I need opinions from others with triple negative bc. Tell me your thoughts on lumpectomy vs mastectomy. I am IDC grade 3 and am on 38 years old. She doesn't think the cancer has spread won't know for sure until all tests are done...MRI, chest xray, pet scan, lab work, genetic testing. Any advice...I want to make the best decision.

bekikat

I was diagnosed with stage 1 TNBC in late January 2012. I am sure that your surgeon explained that lumpectomy with radiation has similar outcomes and survival rates as mastectomy. After much thought, I decided on a lumpectomy and have zero regrets! Breast sparing surgery was much more appealing , having less surgery, less anesthesia, less recovery time was the right choice for me.  I had total confidence and trust in my surgeon. I came out of surgery alert and with very little pain, never even needed vicodiene. The next day I felt great! (Yes great after surgery for bc).  I completed 4 rounds of TC chemo which was not fun, but VERY doable and I have had 11/33 radiation treatments thus far. So far the worst part is how tedious daily rads can be, ugh! In the end, it is your personal choice! You need to feel confident in your decision! Good Luck and Blessings to you and your family!

Sandlake

the5owens~ I'm glad you are having genetic testing done!  I didn't qualify at my diagnosis (Sept 2011) for genetic testing, no family history of cancer!  Since the NCCN guidelines now include all TNBC, I had the test done.  I am BRCA2+, if I had known this last Sept I would've had a bilateral mastectomy instead of a lumpectomy.  You will make the right decision for you based on all of your test results.  Sorry you have to go through all of this!

caperry79

I think it's a very personal choice. The odds of this reoccurring weren't much better with BMX vs lumpectomy according to my surgeon. I had bilateral mastectomy with tissue expanders done at the same time. I have no regrets. It was what I needed to do. I had neo adjuvant chemo and had 2 lymph nodes affected before chemo and ned at surgery. I had no radiation as my tumor was not that close to the chest wall. I am almost 2 years out and do my tumor markers and see my onco every 3-4 months. NED! I like saying that! You do what makes you feel safest!

the5owens

Thanks everyone!! I really trust my surgeon so after all test results are back and after speaking with her I will make my decision. It helps hearing all of your personal experiences has helped me too!! Thanks for always listening and guiding!!

FernMF

5owens - my decision for double mastectomy w/o reconstruction was made with the impression that the tumor was all there was, it would be the least painful/quickest recovery, I had very small boobs anyway, I was afraid of recurrence.  After surgery, when triple negative was more fully discussed, I wondered why I wasn't given the option to do chemo BEFORE so that I could SEE the reduction/killing of the cancer . . . after the fact, that seems for me to be a good option, because one can actually see the cancer shrink/die . . . chemo after double mastectomy forces the recurrence to appear in the "other places" . . . not sure there is a real difference, but it feels different to me.  The knowledge that it won't come back to the breast tissue because THAT tissue is gone is comforting - - but the anxiety is that if it comes back, it'll be with a vengence, and in liver/lungs/bone/blood . . . a bit scary.

My eye doctor (retina specialist) and my oncologist have conferred - now I get to add an eye doctor appt and a brain MRI to the mix of Round 2 Chemo next week.  I believe it's a CYA thing . . . but will serve as a baseline test for down-the-road-recurrence-hunting . . . so I am trying to be positive.  It's frustrating . . but I continue to realize I am having such an easy time I should not complain. . . so, I will not complain and whine.  I feel normal, this third week after chemo.  Things are o.k.  I am loved. 

The oncologist is also switching from dexamethosone to prednisone for the steroid before during and after chemo. . . prednisone and I play well together (except that I will not sleep -- I offered to come in the oncologist office and clean, organize files, archive historical data, etc. . . because I will not be able to sleep) . . . the final decision will occur on tuesday when I arrive for Round 2 . . .

Thanks for letting me talk . . . I hope I can offer positive things to the group.  I've been off a few days, my granddaughter was visiting before school starts.  THANKS to all of you because this is a helpful site for inspiration, education . . . Have a restful night, everyone.

burge

Fern, Glad to see how positive you are. That is very important. I was 6 & 1/5 years out from my TNBC , lumpectomy, chemo and Rad.  New TNBC in other breast  in Aug, 2011. B/L mast,no chemo/rad. reconstruction and now have restarted the ciunt at 1 Year.  Good luck to you. (if you r a mountaineer fan--GO EERS!)

burge

I also had a BLM / LD reconstruction/  no chemo/ no rad.  (had a lumectomy/chemo/rad 6 & 1/2 yrs ago).  Just had my 1 year check-up. All clear report from my PS and BC surgeon. My onc. has release me from his treatment. No scans  or blood work to do. Just clinical exams every 6 months.  Continue monthly self exams.  So far so good.

FernMF

Good Sunday afternoon to you:

Getting ready for Round 2 this week . . Oncologist is switching me to prednisone instead of dexamethasone . . 120 mg tomorrow - - OMG I will be climbing the walls - do any of you have a house I could clean ?  ha ha.  I am anxious.

Here are the short hair before . .  the buzzed head . . . and the wig . . . everyone says the wig looks real - but it does not feel real YET - I will get used to it . . .

[IMG]http://i46.tinypic.com/2ut1etg.jpg[/IMG]

[IMG]http://i50.tinypic.com/j0gtgg.jpg[/IMG]

[IMG]http://i46.tinypic.com/fvhdec.jpg[/IMG]

Babs37

Looking great Fern!!

FernMF

Thanks babs37

the5owens

Ok ladies all my results are in from testing(except genetic testing) and I need some advice.

Chest Xray, Pet Scan, Blood work all normal. Breast MRI showed something suspicious on the left breast. My cancer is on the right. I have to have a biopsy on the left on Monday. Can you tell me how likely it is that I would have cancer in both breasts? I am beginning to freak out again. I was thinking lumpectomy but now if there is suspicion on the left as well should I be thinking mastectomy or am I overreacting? I was thinking my next appointment would be to set up surgery and now I have another week of waiting...so tired of the waiting and I am flat scared. I just want the cancer out and for me to begin my treatment. I know maybe I am complaining too much but I am overwhelmed AGAIN!!

Thanks for listening!! 

FernMF

Make sure you have all your options spelled out. Get a second/ third opinion until you know which option is for you. If chemo before surgery would give you the "it's shrinking the tumor/it must be killing the cancer" comfort, then choose that. My surgeon did not give me that option. The triple negative came to attention after my bi lateral mastectomy. I do NOT regret the surgery and have no plans on reconstruction. But I am much older than you. I am a believer and I prefer to get my toe in every door (option) and let God open the right door all the way. I mean by that to, in this instance, research ALL your options, and look your spouse in the eyes and you both will know. For me and my husband it was a simple question "if I take this route, what if. . ." I had to opt to do the chemo to give me less chance of recurrence. I'll pray for you - for knowledge, courage, and strength - then peace. God wrap your arms around this daughter of yours, and give her comfort, I pray. Amen.

the5owens

Thanks Fern!!

caperry79

You look great, Fern! I had a wig I was never comfortable in. I wore a hat the whole time! I also had trouble with dexamethasone. I asked my onco why they were giving it to me (I had honestly forgotten) and he said for nausea. I didn't have any trouble with nausea do I tried my last AC treatment without it. I was fine! Sleep-deprived Christine is not a pretty girl! Anyway, just wanted you to know I was there, too! Too bad you're not in upper Michigan-I have a house you could clean! Hang in there, I'm thinking about you!

caperry79

@5Owens I know that you could have cancer in both breasts. Fern is correct in that peace of mind neo-adjuvant chemo gives you. My tumor grew so fast it took my breath away every time I had to stuff my left breast into my bra in the morning. By the time my 3rd treatment was over my onco could not find the tumor. By the last and 4th AC treatment, I could not find it. I had no evidence of cancer in either breast or 13 lymph nodes at surgery. I had BMX with TE placed same day. I have not had nipple reconstruction and may never do it. I'm tired of all my energy and money going to correct what this damn disease did to me. I wish you all the best, and hope you have doctors you feel comfortable handing your life over to. That is so important. I will be praying for you.

FernMF

Thanks caperry. I am taking prednisone 120 Mg today, the day after chemo. For chemo they reduced the dexamethasone to 6 Mg. So on that part I think I can do fine. The straight prednisone seems different than the medrol pack for itch. Not so high. God is good.

caperry79

Fern I'm glad you're not so high today. Steroids are strange creatures, aren't they? I'll be praying for good results for you.

FernMF

Thanks caperry.

FernMF

Middle of the night awake. About three hours now. Not miserable, just awake. Some one asked on another thread about efficacy of four treatments for stage 1 grade 3 IDC versus 6 treatments, what do you all say?

jillj

FernMF- I was stage 2 grade 3 IDC (not stage 1), but I had neoadjuvant chemo 4x AC dose dense, followed by 4x T dose dense.  I had a pathologic complete response--so I am a big fan of the 4xdd protocol  

FernMF

Thanks Jill.   I was asking my hubby what he remembered about the 4 vs 6 conversation with my oncologist - same report. . no more efficacy - so - yippee, I am half way through.  This round was WAY easier than 1st round.  I believe the change of steroid was the key . . . switched to prednisone (120 mg total) the day before and same dosage the day after - then on chemo day, dexamethasone - but they halved it to 6 mg instead of 12.  So, my middle of the night awake last night was there but NOTHING ELSE - that was the worst of it.  Today I have eaten normally, walked two miles, took two naps (3 hours this a.m., 2 hours in the afternoon) . . . feel good tonight, moderately tired, ready to read a bit, take my sleeping pill and go to bed.  Thank GOD!!!!!!  If all is well, I'm going to work tomorrow. 

caperry79

Fern I did 4 each dose dense AC and Taxol. I had neo adjuvant chemo and have that peace of mind I felt my cancer shrink. Still scary, but so far so good! I hope you can work tomorrow. I didn't miss much work at all! Take care!