Starting Chemo May 2019
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wow Palmetto, congratulations on that MRI result. It does sound wonderful! From what I have read whatever is left could be just a clump of dead cells the body has not disposed of yet. So maybe you can still have pCR after they take it all out and no live cancer cells are found? But in any case it is wonderful news.
So happy for you the cruise was fun!
Santabaraba, thanks for sharing your timeline! It does seem as if the hair will take its sweet time....
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We all seem to be doing so much better! Jealous of you vacation girls.
Talked with my BS yesterday. Pathology all came back perfect. So exciting! Clear margins, clear nodes, clear everything. So, I tried to get out of radiation, but she said no way. Oh, well. It's still great news. Have my post-op tomorrow, 1 week after surgery. I'm hoping they will clean off some of the glue on the incisions so it's not as itchy. There's no pain, though. I'm trying very hard not to overdo because I feel so good. It's easy to forget and lift my arms to get things in cabinets.
Sounds like most all of us are finished with chemo. Enjoy your time off! That month between chemo and surgery went quickly for me. I still don't have all my tastebuds back, and worried that it's taking so long. I'll be talking to my MO about it at my next appt. I'll be 6 weeks PFC on Friday.
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Bamr, so very happy for you on the pathology! That is fantastic. Wishing you didn't have to do rads. I wonder what their thought is on that. We've been told that if (when) Natalie's pathology comes back clean she will not being doing rads. Let me know what they say so I can bring that up!
Palmetto, sounds like a positive step. It seems like chemo did an excellent job getting that sucker a ton smaller!!!
April, what a great trip. Sounds like you and your daughter made some great memories.
We are pfc 8 days now. Seems hard to believe. Natalie feels super well. Almost too well. Hard to keep her down. With her dad's passing she is motivated to set up the funeral and help her mother and siblings. Hoping her WBC'S are improving so nothing happens there. The way she feels makes me believe they are up. Her one big toenail did turn black! She still has neuropathy in her toes but the fingers seem to be going away. Has anyone had neuropathy in their toes? And does it seem to diminish over time? She wanted me to ask.
Santabarbian, Your updates are awesome and encouraging.
I sure think and pray for every single person on this thread multiple times per day.
Blessings,
Jay
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jrominger, my onc was very glued in to the neuropathy issue and during our last meeting, when I still did not have any in my fingers and toes, he said that if it happens it usually goes away within 8-9 months as the nerves regenerate so slowly. So it may take a while unfortunately. Did you ask your onc about it?
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BAMR, congrats on the clean pathology! But yes, the drawback of a lumpectomy is that radiation is mandatory (or at least standard of care). One reason why I choose mastectomy. The only way you could have "legally" avoided it. But I am sure it will be very manageable for you. So don't worry about it.
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BAMR... what a wonderful path report! Woo Hoo!! I hope radiation goes smoothly.
Jay... so glad to hear Nat is feeling better and can start to help out with her dad’s arrangements. I’m sure that will help her feel better (being productive, helpful to others does wonders for your well being). I had some very minor tingling in my R foot, it is still there but it doesn’t bother me.
I’m going to make some follow up phone calls today. Bone scan results, and I don’t know how much calcium and vit D to take. Also have a question about my surgery. Went on a nice hike this morning. Making the most of this time before surgery
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BAMAR- congrats on the clean pathology!
Here is another reason to celebrate as my PET/CT was all clear!! Thank you everyone for the extra prayers!!!!!❤️❤️
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yeah G1973! I'll have a glass of sparkling water on you and BAMR tonight!
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Mightlybird, drink up!
G1973 congrats to you, too! It's such a good feeling to know all the work we've done has been a success.
Jay, I had a bilateral lumpectomy after weighing the pros and cons of mastectomy. As mightlybird said, some women choose a mastectomy just so they don't have to do radiation. Of course, for others, there isn't a choice. And, I've heard that some that have a mastectomy still have to do radiation if the margins aren't clear. I'm still going to ask the BS at my post-op if maybe I can cut it down from 6 weeks to a shorter duration.
I found this statement in one of the articles, "Lumpectomy followed by radiation is likely to be equally as effective as mastectomy for people with only one site of cancer in the breast and a tumor under 4 centimeters."
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Ladies thank you for all the good info. Very helpful!
Mightlybird, Man are we hoping the neuropathy does go away! Thank you for your info. We haven't seen our onc for a bit. Just the PA and she reduced the chemo down by 20%, saying we don't want to cure your cancer just to have your nerves destroyed. So I liked the curing cancer bit
and 20% reduction may have helped . It hurts Nat to walk on our wood floors but she can still hike around like an animal! One black toenail. I will get more info at the pre-op. Thanks for all your info!!!BAMR, thank you for the info on rads. My Natalie said she knew that with the lumpectomy the standard of care is rads. So with her doing the DMX due to BRACA2 she may not need to have rads if no nodes are involved. Which would be wonderful to move on to the next phase. As most men are we are a tad slower than women!! Thanks again.
April, Hopefully your foot and Natalie's toes will improve rapidly. Yes today was awesome. Natalie is the quiet servant type so she loved helping set everything up for the funeral. Quite surreal as things were going so well for her dad. They have a small farm in Camp Verde. I'll be doing a lot of farming this spring for her there and then our cows are in Snowflake/Taylor. Camp Verde this winter and spring will get us out of the snow in Flag!!
G1973, AWESOME on the scans!! Yes the power of prayer has been so evident throughout all of this and before. I'm a beer snob so I'll have one for you tomorrow. The prayers will continue to come from us for everyone here.
Thinking of everyone. Blessings and thanks again.
Jay
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jrominger, the pain in Nats toe may be from the nailbed being so inflamed and not even neuropathy. That may go away much sooner. A friend of mine who went through our chemo last year had that happening, and as far as I know it resolved once the nail started growing out normally.
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Question: for those doing neoadjuvant chemo, when is your doctor removing your port? I really want mine removed when I have surgery, and I'm starting to get aggravated at the thought of keeping it when 1) I'm not doing any more chemo or treatment that requires IV administration and 2) I'll have to keep going to the clinic to get it flushed. I'm just curious if any of you have had that conversation with your BS or MO.
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palmetto... mine is being removed during my mastectomy. I’ll be happy to have it gone.
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Mine is also removed during mastectomy. Can't wait to get it out!
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palmetto- they took my port out during my mastectomy. That was the only real sore spot after. Very liberating!
Jay- I had a touch of neuropathy but the real pain start after when my fingernails lifted a bit. Good news is the pain only lasted a day with each. The last one was “oozy” on Monday. Hope they grow out quickly
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Thanks ladies! I have a call into my MO to discuss removal during my BMx. After my final chemo, the only remaining treatment she mentioned for me was Tamoxifen. I was trying to figure out why my BS said it was too early to remove it. The only reason my little chemo brain could come up with was $$. By doing it later, it ensures another procedure. I hate being that cynical, so that's why I reached out to you, my "experts." I knew you'd be able to weigh in and help me with a way forward!!
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Palmetto. Natalie’s port is supposed to be removed during her DMX on 11/5. Get that nasty little companion out 😜.
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Hi everyone. Hope you are all doing well. I know surgeries and radiation are occurring or looming!! Praying for everyone!! Hope you are all doing exceedingly well!
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Hello everyone! I, too, hope everyone's surgeries and radiation treatments are going well. I'm feeling pretty good, hair is growing in (why won't my eyelashes grow though?), I'm increasing my activity and all my pre-op appointments are done. Just working hard so I have some money in the bank to cover my next leave. I started my Ai (letrazole) last week. No problems yet. My bone density scan showed osteopenia in my L hip and lumbar, so I am taking a lot of calcium and vit d as well. repeat scan next year.
I wish I knew for sure if I need radation after the mastectomy. It doesn't seem to be common practice so I'm really hoping I don't.
Would love to hear how everyone is recovering from chemo.
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Hi April. Good to hear you are feeling pretty good. Yes I am praying that both you and Natalie don’t have to do radiation!!! That would be fantastic for lot’s of reasons. We won’t know until pathology 7-10 days after surgery. That will be an interesting time waiting. Natalie says she feels basically a 100% minus the neuropathy in her toes. Her hair is definitely growing but she still has shiny parts on the side of her head. She thinks however she may still be losing a few eyelashes 😡. She never lost them all. So all in all she is good. Pre-op next week. Surgery the following! When is your surgery?
Her dad’s funeral was touching but hard!
J
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Hi everyone,
Jrom- Please accept my late condolences to Nat and you on her father's passing. These things are never easy, especially at this time. Hoping Nat's neuropathy subsides and doesn't need radiation. But, the hardest part of rads is just going to and from appts. I am doing great after finishing rads Oct. 2nd. My followup with radiologist is Nov. 8th. She will set up MRI and mammogram early next year. I also lost eyebrows and lashes weeks after chemo. They have grown back, however. My hair is coming back thick and looks like a boy's haircut now. Nat will be in my prayers for preop and surgery.
April- Prayers that your surgery goes well. Sorry that you have osteopenia in spine and hip. Keep up with the vitamin D and calcium. I increased my D levels by 15 points since increasing my intake of D. Glad that your AI is going well so far. I have been taking anastrozole since Sept. 5th and so far so good. I take mine in the afternoon. Some say it's best to take it at night as hot flashes and joint pain is the common side effects. Hoping also that you won't need rads.
Keep strong and hello to everyone else.
Pat💝
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jrominger, if Nat does need radiation, honestly, it is not bad... It was a bad ~2 weeks for me (the last week of rads when my skin was very inflamed and the week after that) but it heals up very quickly. Hyperbaric Ox helps a lot with healing. If you are anywhere near the "cut off line" you might want to consider it... Rads hits the lymph nodes in the armpit and the middle of the chest which are not biopsied that I know of (but perhaps they remove them in Mx?).... Again, consider looking at Protons, more accurate, no exit dose, and less "wash" onto healthy tissues. They have it at Mayo.
I am suddenly/recently feeling a whole lot more energetic and normal. The last 2 weeks or so I keep having energy to spare at 10 pm instead of feeling like an expired parking meter... that's new, since chemo/surgery/rads. I am 11 mos PFC, 10 mos post surgery and 7 mos post rads.
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UpstateNYer, Santabarbarian. Good to hear from the two of you. You two sound like you are doing really well. So glad to hear that but not surprised with your great attitudes. We have heard the same about rads. The hard part for us is we would have to move down to PX during the month of Dec for the 6 weeks of radiation. A friend has offered his home, which is a blessing. PX in the winter is fantastic so we'll make the most of it. Santabarbarian, I wish we could go to Mayo and do the proton but they don't take our insurance. Our cousin's wife went to Mayo in Minn. for TNBC 3 years ago and did the proton rads. She also got the 3 shot vaccine that they are working on. They also put her on tamoflaxin (sp) as a precautionary and she is doing fantastic. The mayo vaccine is to be out in 8 years and they believe it will do amazing things for TNBC with a simple vaccine! Amazing if true.
Upstate, thank you for your prayers for Natalie's upcoming surgery. So greatly appreciated! Sure praying for everyone on this thread.
Great to hear from you two!!
J
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Hi, everyone! Love hearing how everyone is doing. I hop on and read these forums all the time but we have all been quiet. I hope you all are enjoying your time away from chemo and are recovering from SEs. I still have the weird taste bud SE that is driving me crazy. It's helping me lose some of the excess steroid weight, though, so I guess it's not all bad.
My eyebrows also disappeared after chemo. Eyelashes were gone already. But, I'm almost 7 weeks PFC and my eyebrows reappeared almost overnight a few days ago. They look perfectly groomed; still lighter in color, but similar to my hair color which is growing in and almost covering my scalp. I have tiny eyelashes, too. I've read that I will lose them again, maybe more than once, before they grow in normally. The eyebrows do help me look a little less like a sickly person.
Lost my big toenail a couple of days ago. It has been lifted and loose for weeks now but my MO told me NOT to pull it off, to let it fall off naturally. It did, and it's not too bad. Ugly, but not painful. A couple of other toenails and fingernails look weird, but are only loose down the middle so I think they should hang on. I hate that squishy sound after I get my hands wet, though. I'm using an antifungal tincture to try to keep it dry underneath.
I know we all have different kinds of surgeries, but I hope I can reassure you by saying surgery wasn't bad. I enjoyed staying in the hospital letting them take care of me and letting me relax. I go back on Halloween to get the tape taken off and my release. I can't wait to get out of this bra that they are making me wear for 14 days, 24/7.
April, I'm going to go on letrozole, also, eventually. I see the MO on Friday so I'm sure we will talk about a starting date. I need to quit reading the forums about side effects. There are lots of people who hate that drug!
My surgery was lumpectomies, so I do have to do radiation and I'm nervous about it. I hope you and Nat both get everything taken out with the mastectomy and can skip this part. I think Palmetto and Happy are scheduled for next week. Praying for all of you to have a successful surgery with an easy recovery.
Santabarbarian and Upstate, it's so nice to hear from those that are ahead of me. Thank you for keeping up with this group.
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BAMR, great to hear from you. Glad the surgery went well and you received some well deserved TLC!!! Sorry about the rads but from what UpstateNYer and Santabarbarian say, it sounds very doable and most likely very worth the trouble and effort. Thanks for the info on the eyebrows. I'll pass that on. Nat didn't lose all of hers but most. With those pencil thingy's it seemed to do the trick!!
but she'll be anxious to have them all back. We'll be praying for Happyanyway and Palmetto for sure for next week. Oh and I agree sometimes reading to much of the horrible SE's or possible outcomes etc. can be a tad daunting and deflating. Natalie looks at BC like a really bad flu that lasts a year and then back to normal life!!! I love her attitude and by God's grace that is what is going to happen for all of you!!!!!Thanks for checking in. Good to know what to expect as we are just 2 weeks PFC.
J
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Hello May friends, so great to hear from all of you doing well, apart from Nat's foot pain. It'll go away!
I am doing well myself, pretty much exactly 3 weeks pfc. Stamina/energy wise I think I am back to normal, also taste, digestion etc have all returned to normal. However, I had a bit of a scare (and still have to ask my breast surgeon about this next week), as maybe 5-6 days ago, I suddenly had pain in my lumpectomy scar when I extended my arm especially to brush my horse (I had a lumpectomy before chemo, which left one margin positive, hence the need for more surgery after chemo), that after a few days radiated into my arm and shoulder. It was not that bad, but definitely noticeable and I got a bit scared. Then I found out about "post mastectomy pain syndrome" which can appear months and sometimes years after lumpectomy/mastectomy. My guess is it is some light form of this. I started shoulder stretches and took my manure shuffling a bit easy, and today it is pretty much gone. I guess this is something to be aware off, after the main surgery in November, that this can happen. It is not over friends!
I wish everyone the best with ongoing treatments and looking forward to hear from you.
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Thanks everyone for checking in! It's helpful to read how everyone is doing and hope we all do well with whatever is next for us.
Bamr, the letrazole is going fine. I'm having hot flashes but I was during chemo so I don't know if it's just my body adjusting to menopause, leftover chemo effects or from the letrazole. It's not horrible but hot flashes aren't comfortable.
I've still got a few weeks before surgery, trying to get everything in order. I find myself cleaning out closets and junk drawers. There are still a whole lot of question marks for my future treatment, will I be able to have a nipple sparing mastectomy (they'll check blood flow supply during surgery, I'll either wake up with them or not) and do I need radiation? I already had 4 lumpectomies and oncoplastic mastopexy, SNB on both sides, nodes neg, not sure why I would need radiation. But I'll meet RO after surgery and get some answers. So, staying busy is key to my sanity.
Mightly, sorry about the residual unexpected pain. Glad some simple measures to treat it seems to have helped.
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hi everyone!
Checking in to see how everyone is doing. Looks like we all moving forward.
HappyAnyway, Palmetto, wishing you best next week, I am and will be praying for you!
Jrominger, I am so sorry to read about Nat’s dad passing. Please accept my late condolences, my heart goes out to both of you.
BAMR, April, I was on Femara for more than three years and I tolerated it really well. It does take a bit of time for your body to adjust, I recall that I had joints stiffness and feet pains at the beginning but it did get better after the first couple of months. I myself will start Aromasin next week.
I started my rads two weeks ago, so far, daily visit to the clinic is the most annoying SE:). Here is to hoping that it will continue this way for the next three weeks
Have a fantastic weekend, everyone!
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Lacombattante, good to hear from you. You made us laugh about your radiation SE!!! We are like April and hoping not to do rads but won't know until after pathology. We do all our pre-op stuff this Tuesday. Surgery the following Tuesday. What is happing over the pond these days? Any cool hikes?
Mightlybird, how is your chest/shoulder pain now? Hopefully it's all gone.
April, I couldn't agree more. We both have to stay busy to keep our minds off things. Big rugby game today and 4 friends coming over tonight. We also went to Springerville to watch our eldest grandson play football. The drive across N. AZ was a lot of fun.
Have a great weekend everyone.
J
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April, man, with 4 lumpectomies, I can see how your sanity is at risk. Hang in there. You'll get answers soon.
Jrominger, thanks for asking about my shoulder pain. Unfortunately, no, it is not completely gone. My shoulder, unfortunately, is damaged goods, from 35 years of horse-ownership, with spooky horses trying to pull my arm out (think 1000 pounds yanking my arm), and 12 years solid of daily manure shuffling. I have all sorts of muscle, tendon and nerve damage in the shoulder area, I am sure about that. I have had those shoulder pains often before, usually flaring up twice a year. The only weird thing this time is that usually I have a reason why it flares up, i.e. I have had an incidence with the horses or just basically overused my right arm/shoulder. This time, it seemed to have come out of the blue, 2 weeks after final chemo. I have not done any more or less to my shoulder than all through chemo. In fact, when everybody reported on bone and muscle pain during chemo, I sat here wondering why I feel so great and have no pain in my muscles whatsoever. I think part of the reason is that I have been under steroids for the past 6 months. That for me may have been enough to mask all my little aches and pains. And that was also part of the problem, as I neglected my shoulder stretches that prevent those shoulder flare ups usually.
But now thinking back, there may have been a trigger even this time, as we went to a concert right before my shoulder pain started, and I wore my relatively heavy handbag over my right shoulder for several hours dancing along in that concert, and during the wait before. It was the first cold day here, I was sweaty and even my husband had a stiff neck the next day.
OR, and that may be a real possibility, the flare up is a form of neuropathy. In our last meting, my oncologist did say that neuropathy can develop up to 3 weeks post final chemo (maybe that's how long it takes for the steroids to leave the body so that they can actually be felt?). I am sure I have pre-existing nerve damage in my shoulder and the Taxol surely did not help that.
In any case, for now I am just taking it a little easier, doing a lot of stretching and massaging. And I will talk to by BS on Tuesday. It has gotten a lot better, but by the time evening comes I can definitely still feel it.
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