Calling all TNs
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Well. Kathy's bilateral mastectomy and expander placement are all done. Both the BS and the PS were extremely pleased with how it went! BS saw no visual signs of any cancer, though that has to be definitively confirmed by the pathology lab. PS says he was "able to put in the same volume the mastectomy took out" so he should not have to further expand. He also said that because of that, it leaves little room for fluid, which means the drains will likely come out quickly. She's hurtin for certain right now...but the morphine pump is doing its best to help. She should be discharged tomorrow. We're both so happy to have this step in the rear view mirror. Onward with the battle! Next stop, 11/6 ovary removal.
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Happy to hear Kathy is doing well, Alhusband! Take good care of her!!
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ALHusband, WONDERFUL NEWS! Thank you so much for quickly updating us. Oh I'm so happy to hear that everything is turning out so well for the both of you. Good good job there!!
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Al - so happy Kathy's surgery went well! Hoping for a speedy recovery for her. You are both so blessed to have each other - I'm sure she really appreciates your "super" support during this battle! Don't forget to take good care of yourself too so you are at your best to take care of her! Stay strong all fellow warriors - we will win this battle! Lana
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Alhusband I am glad all went well
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Thanks all for the well wishes. Kath's home now and resting...ahem...comfortably?
I'm the new "drain guy".
"That's the sound of the men....workin on the drain...gaaa a ang! Oh don't you know, that's the sound of the men, workin on the drain, gang!" ~ Sam Cooke
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drains suck...hope they are out soon. healing wishes
Maggie
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My husband cleaned my drains too- it grossed me out (I know it wasn't really THAT gross, but I didn't like it!).
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Did anyone decide the side effects of chemo weren't worth the possible benefits? I'm really wondering...if you have chemo and have a recurrence do you just get the same chemo again? Why would it work the second time if it didn't work the first? Really trying to get off of the fast track to chemo and make a real decision...any thoughts?
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Alhusband, Thrilled you have your lady home and all went well. Best wishes to you both.
All you other ladies, you are my inspiration. Just over three months after finish of all treatments. Rads fatigue lifted. Right now feel " Normal " again, just concentrating on the future and reading up on latest on TN, not as scared as I was a while ago.
Blessings and swift healing to you all.
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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.
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DorisMarie – Congratulations!!!!!
AL – I’m so glad your wife’s surgery went well. That’s a hard one to go through. Once you get home, she may do well sleeping in a recliner for the first week or so. That’s what I did. It was hard to get out of bed but the recliner was a little easier.
Thank you all for your support and comments. I’ve come to find that the problem is in my companies writing of the plan. The insurance will cover it, if my company approves it. I’ve received a letter from an independent reviewer of my case stating the treatment is medically necessary as well as a letter from my MO stating it’s medically necessary. It’s now up to my company to make the decision to cover the drug. Fingers crossed and prayers flying I get an answer (the right answer) soon! Otherwise, I will start treatment and figure out what to do to get it paid for. I just don’t have $35,000 lying around.
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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!
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Beach. Thanks for the well wishes. She's home. Prior to her surgery I had moved the recliner into the bedroom from the living room. It is MUCH easier for her. Saturday and Sunday were rough. She's doing better today. The recliner in the bedroom instead of the living room allows her more privacy and quiet. Also got that thing that elevates the toilet seat. That seems to help too. It's amazing...the cat sleeps on her lap 24/7. I swear she (the cat) knows that Kathy's not feeling well.
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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.
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Got the post mastectomy "all clear" from the pathology lab on Kath! Woohoo! Thank God!
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Woohoo & thank God indeed ALhusband! That's awesome news!
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Beachbound009-praying your company hurries up and approves your treatment.
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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
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Hi KittyKate! Sorry you have to be here but it is a great place for support. I was first diagnosed when I was about your age, I was 36. I am brca 1 positive, have you had genetic testing? Most of us, if not all of us, lose our hair:( but I do agree, I think it is best to take control and shave it before it falls out in clumps! We are here for you!
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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..
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AlHusband - congrats so much to the both of you, I'm very ecstatic to hear the excellent news!
Beachbound - praying for a great news update from your insurance!
Kitty - On the regimens where there is hair loss, it usually occurs between day 12 and day 14 of cycle number 1. So if you wanted to keep your hair a little while longer and still have control of shaving it, you can use that timeframe as a guide. Scalp does become sensitive during the initial chemo process, I'm not sure why, but shaving your head will likely help with the sensitivity issue as well!
I'm so delighted to hear that you get to be part of a study - you will be getting state-of-the-art treatment for the benefit of yourself while also advancing the treatments and continued research for TNBC. That is wonderful, and thank you so much!
Regarding the fast growing tumor, a colleague's wife is a 10-year TNBC survivor. She was dx'd with a 1.5 cm and in the 3 weeks time that she and her husband were deciding her care and treatment plan options, it grew to 6 cm. She had a umx, then chemo then radiation, and just two months ago celebrated 10 years cancer-free. She was dx'd with stage 3 and positive nodes at the time -- and now she is doing wonderfully. I asked him what she did as far as lifestyle changes, and he told me she does the mediterranean style diet, no dairy, exercise and yoga.
I'm attaching a couple of links for you regarding diet and exercise and their beneficial properties for TNBC as well as a link to the Mediterranean-style diet. The main thing researchers talk about a lot is keeping a low-fat diet and low-sugar diet with a TNBC diagnosis.
http://nosurrenderbreastcancerhelp.org/page93/page100/page100.html
http://www.mayoclinic.com/health/mediterranean-diet/CL00011
Please let us know what we can do to help you.
Hugs!
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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
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I need to say something. I CANNOT BELIEVE they throw you out of the hospital as quickly as they do after a bilateral mastectomy with expander placement. What does it take for someone to be able to stay in the hospital these days? For God's sake my wife can barely move, let alone take care of cleaning and emptying drains! Holy crow!Insurance companies are getting a bit ridiculous...aren't they?
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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
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Wife completed chemo on August 6th. This past week she has begun to develop a visible "5 o'clock shadow" on her head. Just one more step toward putting this whole nightmare behind us...hopefully forever.
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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!
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PS - ALHusband - hang in there too. It is a big responsibility for you, her caretaker, that nobody could have prepared you for how much work it is. People sometimes think recovering from surgery is coming home and resting, but it is quite a bit of work. Up and down with going to the restroom and they told us to have me walk a few minutes every hour so I wouldn't get stiff and to try and get movement going, then you are up and down with the meds, and then up and down emptying and recording the drains (they gave us a piece of paper to record how much we fluid we were emptying), and of course, none of these things falls on a schedule with their other one - so it's constant activity.
Remember all the great news you all have received and use that as your inspiration to continue with the excellent determination you have both shown. By this time next week you'll look back at this and be amazed at how different things are.
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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.
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HI KittyKate78 - I too, was diagnosed earlier this year at 35 and it was a bit scary. I did E-C (4 treatments, dose dense every other week for 2 months) and now am on Taxol, just had #7 of 12 yesterday which means I'm over halfway through this one!
It was a bit overwhelming at first - all the appointments and then I got a second opinion b/c a) I wanted to get a different viewpoint and b) the inital set of doctor's were over an hour's drive each way on the freeway plus it was $20 to park; I now see a doctor less than a 1/2 mile from my house.
I was to have a lumpectomy first but in the 6 weeks between the last scan (MRI) to the surgery the cancer grew out along the biopsy line and we ended up doing chemo first. The nice part is, I can tell it's working as after about the 3rd EC I could no longer feel the lump!
My hair was long, almost halfway down my back, and it started falling out after the second EC. I trimmed it to my shoulders that Tuesday (I do chemo on Mondays) and by the end of the week I shaved it to about a 1/2 inch in length. It was freeing actually and I felt like *I* did it myself instead of letting chemo strip it away slowly. It fell out so much in the next month or so but I always maintained a bit of a sparse peach fuzz (which incidentally, is starting to grow back now). One tip: I used a lint roller on my pillows each morning to get rid of the hair that fell out overnight. It was too warm to wear a cap at night and I hated looking at all that hair!
Good luck to you and stay strong.
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