Calling all TNs

Thank you scouser. Glad you're less scared. Whether we have 5 minutes or 5 decades left on this Earth, fear never adds even one second...so live life and enjoy!

relocated...I sent you a PM that will maybe help you with your decision. I think the conventional wisdom is that chemo is a non negotiable with triple negative. But, I'm no doctor and everybody is different.

Relocated, regarding your question on chemo and side effects.  I never once questioned anything about the side effects of chemo.  I felt, cancer is not something to take chances with. Regarding your other post on damage to the heart.  If there is a risk to your heart, your medical team will discuss that with you.  All of us are faced with different risks, as we might have different chemo regimens and have a different health history than someone else.  If there is a heart concern issue, your Onc will likely suggest a regimen that is just as effective without increasing that risk to your heart. You would probably benefit from seeing a 2nd Oncologist for their opinion, and be able to get additional information, risk assessment, their proposed treatment plan and benefit to risk ratios from them.  Compare and see how you feel after you have more guidance.

I just reread your post and realized you wrote that you want to get off the fast track to chemo. My Onc definitely made it a priority, the chemo, and about two weeks after my bmx, his office called to make sure I had scheduled to get the port in.  They were almost in a panic that I had not scheduled that yet, but I was under the impression they were handling that, so it was just a misunderstanding - but the point is that chemo was to be started as soon as possible following the bmx healing process.

Regarding your question about recurrence, the majority of TNBC survivors will not have a recurrence.  I have literature from the TNBC Foundation that has this in it, if you would like me to send it to you please pm me your e-mail.  Additionally, when I went through treatment my Onc told me to only focus on treatment, not all the what ifs.  It was great advice.  Give your body the best chance now by expending your efforts only on the most positive of thoughts and focus on your current treatment.  Recurrences are treated according to the information the doctors have on the patient, the primary and according to the pathology of the recurrence- it's too large of a question to answer via post, but basically chemo treatments have different strengths and different roles that they play, and are recommended for different types, stages, recurrences, etc. When someone has a recurrence they use the most speciic agent they can for the situation at hand.

But on a personal note, I want to say to hang in there. There is a lot to worry about but if you can find something positive to lean on, that will help you. Also, look to the long-term survivors of TNBC, so you can see that you can make it and use their success for positive reference validation.

Read Patricia Prijatel's blog:  PositivesaboutNegatives. 

Read uplifting books and seek comfort with the most upbeat positive people in the most positive environments.

And remember that these boards refelct only about 1% of the total TNBC population - and that there is lot of research happening right now with TNBC.

I'm sending you a big hug!

AL – We also moved the recliner into our bedroom and our 2 cats and one dog sat on the edge of the bed watching over me the entire time.  I was scared to let them sit on me as they like to cuddle around my chest.  I told them NO once and they never tried to get on the chair again.  They DO know when you’re hurting and I just love how they want to cuddle you.  I’m glad she’s doing well and she has her kitty nurse on 24 hour watch.  Honestly, I slept in my recliner for about a month.  I’m a side sleeper and that’s the only way I could sleep on my back.  

Woohoo & thank God indeed ALhusband! That's awesome news!

Hi all! My first post. I am 35 and was just diagnosed last Tuesday. Saw the oncologist today and he is recommending chemo first. Actually got into a cool new study, so I might get a new drug in addition to A-C-T. They are going to do my Taxol first; once a week for 12 weeks, follwed by AC every other week for I think 8 weeks. I'm so overwhelmed at this point. Rushing to get my scans, and port, and everything done so I can start. My mother died of bc at 34 so this is terrifying for me. I have a 14 month old son and I can't bear the thought of leaving him. I'm glad to hear so many have come thru TNBC...mine is progressing pretty rapidly...today the dr felt my armpit and thinks I probably have node involvement. MRI results aren't in yet but he says chemo first is the way to go. Did everyone here lose their hair on TN chemo meds. Thinking of just shaving it to regain some control

The hair grows back..believe me..I now have thicker hair than before..and curls to boot! Go ahead and shave I waited till just after 2nd tx..was like a snow storm with the fall out! so much easier with  a crew cut..SE's fade away..And I am very grateful for chemo...Best wishes to all..

Hi everyone - Here is my report for those of us on the recurrence couch.  I haven't been posting much but I do read everything on this thread.  Here it is:

Today I'm packing for my trip to TX for radiation.  I have three days worth of appointments starting on Monday.  All the scans to check for progression.  Ha!  There IS NO progression.  They better do the scans right so they don't see anything.  I want the GOOD scans.  No messing around this time!

I'm sick of treatment!  Numb/then burning hands and feet. Bald head that is growing hair in on the sides but NOT on the top!  WTH is up with that!??  The only good thing about that is that I'm 5' 10" and not many people can see the top of my head.  Still occasional nausea, and my colon is still messed up, and sleep is a joke.  That is WITH meds.  Sheesh, I'm done I tell you, done! (I finished chemo on 8/26, so yes, I know I'm impatient.)

Well, except for 3 days of appts and then rads.  Maybe I'm just a big sissy.  But really, 10 months of treatment each year for 2 years.  Enough already!  Hahahahah, I AM a big sissy.  I know others have been through much more.  I admire their stamina and heart.  Like Nel and Julie.

I know we each have our own road and we have to navigate in our own ways. Me, I'm just busy kicking the big damn rocks out of my way.

Thank you all for listening to my rant.  You're amazing.  Please use the "block" feature if you must. 

Phyllis

alhusband...they are stupid to kick us out so soon.  Insurance makes too many important medical decisions instead of trained docs. Unless you have a fever indicative of infection they kick you out quickly.  Hope she gets better soon. 

maggie

Phyllis, so glad you are done with chemo and moving on to radiation.  Why is your radiation being handled in Texas?  Is this out of state for you?  Why did you choose this route?  Also Phyllis, for those of us who monitor things, would you please tell us how you knew you had a recurrence?  Your recurrence is local in the breast only, right?  From what I recall, you found this quite early again, right? I think about you quite often and everyone going through this difficult struggle right now. 

ALHusband, did they send your wife home with a pain pump?  That helped me dramatically.  When I was in the hospital, I got into my room following surgery about 4PM and I was out of the hospital the next day at 11AM.  I didn't get to sleep at all, it was too noisy, so I never rested. For me, I was much happier being at home.  I was going to have the same pain regardless, and as long as someone can help me to the restroom, assist with drains, get me fed, administer my antibiotics and pain meds and help me get in and out of clean clothes - I preferred to be at home. 

I also think sometimes people do heal better in their own environments, plus there is much less risk of infection from the bacteria and diseases that are at hospitals. 

I got home on Thursday and by Monday I was able to manage things by myself, and I sent my husband back to work on Monday.  I do remember it was much easier for me to stay on the couch and I loaded up a big stack of pillows to lean against.  So I slept sitting up on the couch and I did it that way for almost 3 months. It might be hard to get in and out of the recliner, and I don't know how much support it has, but try the couch, and maybe she won't get to stiff, if she is stiff.  If it is hard for her to get up and out of a recliner during the first few days, since you really can't move the upper body too much without pain, try the couch. I know someone else who raved about a special pillow for the bed that kept them propped up, something called a wedge pillow that they got at Bed Bath and Beyone.  On the first few days that I was home alone, I couldn't reach high into the cupboard, so we preset some things out for me on the counter so I could manage with my husband at work - this did take a bit of strategic planning.  Thank goodness the chocolate was down low as well!

As far as bathing, what we did was installed a handheld showerhead. This significantly improved the independence level, and we would just leave it hanging down, so I could use it on the days I felt I needed to. Also the first week or so we did tape a plastic garbage bag around me to ensure the bandages and medical bra did not get wet.  That helped - my husband helped me wash my hair (couldn't lift arms real high yet) for the first couple of times in the shower.

You are in the roughest part now, but hang in there, in another 48 hours things will seem much different to the both of you!

Many hugs!

Inspired they didn't send her home with a pump. She did have one in the hospital for the first 12 or so hours after surgery...but then they took it away and switched her to oral meds. So instead of a pump they sent her home with a fistful of prescriptions.

Inspired, I am originally from Houston so I decided to go to M D Anderson there initially for treatment.  I have an MO here in NE that handles my chemo according to the MDA recommendation.  I just didn't like the Radiation Oncologist available up here and I lovelovelove my RO at MDA.  Anyway, that's why I am going to Houston for rads. I have friends and family that I stay with.

My recurrence - yes I found it early.  A small lump below my lumpectomy incision.  An ultrasound also found a suspicious node.  We had the fine needle biopsy report on the node in 10 minutes an it was cancerous.  So was the lump.  All of this was 5 months after finishing rads in the first go-round.

The first time I had a Lx without clean margins then chemo, then a 2nd Lx and SNB.  2nd Lx and the SNB were clear. Then rads. Hope this helps.

Phyllis

Oh ALHusband, that is terrible!  Not having the pain pump so early has got to be difficult.  I had it, it was supposed to last 5 days, but ran out early on Sat AM.  I had it about 2 1/2 days. The thin line to it was surgically sewn in during my surgery, so to get it out, they undid it at my breast surgeon's office.  I had the drains for another week.  The bs said they were ready to come out at 1 week, but the ps said things could happen, so he waited 2 weeks.  That was the worst part of it.  Once those go, it's like total freedom.  When is your wife's first follow-up appointment?

ALHUSBAND...I got out of my double mastectomy w/tissue expanders at 4pm on Monday and was discharged at 11am on Tuesday...just like your wife I was in horrible pain, could barely move and could do nothing. It was crazy and I was in no shape to be home. It was the hospital, not my insurance...they had authorized 3 nights for this surgery.

Inspired - I will fly down tomorrow wearing my compression stocking on my left leg (not related to BC) and my lymphedema sleeve on my right arm.  I don't have lymphedema, yet but I'm not taking any chances!  I will be all squeezed in.  I hope I don't pop something!  I will stay with my girlfriend while I'm in Houston.  We've been best buds since high school so she puts up with me. 

I have a bone scan and X-rays on Monday and CT scans on Tuesday.  I see MO, RO and surgeon on Wednesday and they will have the results of the scans.  MDA also has a Cancer Prevention Center in the Mays Building where the Breast Center is.  I also have  gyn and gastro exams scheduled on Tuesday at the Cancer Prevention Center.  I like the idea of getting the maintenance things done where they have my full BC history.

About my lump - yes it was close to the surface and I felt it immediately.  I don't have an implant - the first time I had 2 lumpectomies so I still had my breast - so I did not mistake it for anything else.  My MO here suggested scar tissue and did the original scans.  I told her from the getgo that it was not scar tissue.  It felt just like the first lump and it was painful. Mammogram and diagnostic mammogram were inconclusive as was the follow up ultrasound.  She was going to follow up with an MRI but I already had an appt at MDA for a follow up with my RO so I skipped the MRI and just went to Houston.  At MDA the mammogram and diagnostic mammogram was inconclusive again.  However, with the ultrasound, they scanned higher in the axilla and found the node that they biopsied.  I never did feel the node and neither could the RO.  I'm very glad the US found it!

I think there is a lot of debate about why some recurrences happen at the surgery site.  One view is that the surgery releases some cells that hang around.  They must be tough little buggers because they survived 2 surgeries, chemo and rads.  Others say that isn't proven.  I don't know the answer.

I'm finished packing!

Inspired...follow up is Friday. Doc says 2 of the 4 drains will probably come out at first follow up, and, judging from the numbers I'm recording as I empty them...that's probably what will happen. She's doing < 15 ml/day consistently on 2 of them. The other 2 are consistently higher. The PS wants < 15 ml/24 hrs for "a few days" before he'll take them out. They (drains) are itching the poor woman like crazy now! She was sneaky this morning! I awakened to find her up and about and she had made a pot of coffee and poured herself a cup. This is a union shop here and that's supposed to be my job! I have to say this. For a couple of days her stiff upper body walk, coupled with her sorta loopy facial expression, would have made her a good candidate for a lead role in a zombie movie. <slap!> There. Don't worry ladies. I just slapped my own face for that comment...on behalf of all of you.