Starting Chemo June 2017
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Kim, sending you lots of love. I'm so sorry it wasn't better news for the lymph nodes. Keep up your great attitude and tackle this beast!
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Kim wish the news was better about the nodes. But they are gone now and can do no harm. Good riddance. I hope you are able to gently move that arm higher each try. Your positive outlook is so inspiring.
I met with the radiology oncologist this morning. All doctors think it is good news my nodes were cleared by chemo. It presents a dilemma for whether or not to go ahead with radiation. Years ago, the standard would be surgery first and check the nodes. If nodes were positive it would mean chemo followed by radiation. A no brainer since studies show radiation is successful for tumors greater than 5cm or node positive situations.
But since my treatment was reversed and chemo was given first and it cleared the nodes, the question is whether to consider me node negative or node positive.
The RO said that he thought in a few years to come, my scenario would be considered node negative and no radiation would be recommended to avoid the side effects of overtreatment. There have been 2 small studies done that have shown no increased recurrence if radiation is not done. The studies were small, though, and not randomized.
The RO said if we were to go with current standard, he would treat with radiation because there is a known benefit. He said the medical field will not take away a treatment with known benefits until it is proven not to bring down survival rates. They are in the process of gathering that data.
I am the perfect "gray area" subject for a national clinical trial taking place now. I would be randomized and I either would receive radiation or not.
I have not made a decision yet. Another crossroads. Argh...
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HapB When an MRI detected the second suspicious area in the breast it also identified the suspicious node. I did have the node needle biopsied and it came back positive. So technically I was node positive at the start. After chemo, however, the nodes test negative.
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Thank you, Ladies. I am going to try and stay positive and trust that my doctors and I are doing all we can. I will say this surgery has been much more challenging than the first. I am hoping to get the drain out by Mon/Tues. I have a couple of fun things to do next week, and I would appreciate not carrying along my lymphatic fluid to the events.
I hope y'all have a great weekend. I've been shopping online, and I still have more to do and get shipped. I had Christmas photo cards made and picked those up today. Thank goodness typing is not an issue. That's because it is low on my body. I can't even get a glass out of the cabinet with my right hand. I'm sure many can identify. I am starting my myofasical release again next week, so I hope that will help me quickly recover.
Peachy, It seems I never really had too many choices in my treatment. For me, I guess that makes it easier, so I I hope you will come to a decision about radiation that you can feel comfortable with and move forward from there. I know whole brain radiation in 1986 caused new brain tumors for my first DH in 2009, but he had 23 good years in between. Also, the brain is very different. I will ask my RO lots of questions about it next week. I don't see that I have a choice, since I had a total of 11 + nodes. I tried to change that on my profile, but it didn't seem to let me. I cannot tell you how thankful I am that my BS took them all. Well, I will be much more thankful when this arm heals. It's a bugger bear right now. I'm not comfortable, but it will pass.
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Kim, Try going to my profile, my treatments and adding another surgery for the lymph nodes. Have a good weekend.
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Kim Part of me wants someone to just tell me what to do. I do have concerns over "kicking the can down the road" and having issues later due to radiation today. The RO said looking at radiation done years ago and how it is done today is like looking at the old huge tube tvs and the slimmed down tvs of today. Technology has come a long way, and it is much more targeted but he could not say heart/lung complications were a non-issue. Just less than it was. He said one person's radiation experience does not indicate what another will experience (like all our treatments so far) so a bunch of info that may or may not apply has to be processed. ugh.
I haven't bought one Christmas gift yet. I'm just not into it. I hate to just buy something for the sake of buying something. For example, my sister has already said she doesn't need any more clothes, jewelry, knickknacks etc. I feel the same way. Maybe the Christmas spirit will come over me. Maybe not. I dunno.
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Peachy, Because your tumor was on your left side, is that why you are concerned about the heart? I never really thought about the lungs and radiation. I already have nodules there, so that's not good.
I am sorry you are not in the spirit. I played some holiday music this morning while my DH helped wrap gifts for me. It would be easy this year to sit the festivities out, but I am going to try and enjoy as best I can. Wish we all could somehow gather together to celebrate how far we've come (and how far we are going.) It has certainly been a year!
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Unfortunately radiation to the left breast can inadvertently target the heart, left lung, and part of the stomach. My RO and respiratory therapists will have me perform deep breath holds while receiving radiation. They explained that breaths expanding the rib cage move the heart down and away from the radiation fields.
Yes, 2017 has certainly been a year. Here's to a healthier 2018 for one and all!
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Fotunately, I was able to get the drain out this morning, but it hurt so bad upon removal I screamed and cried. This is not my norm. I totally shocked the nurse, so I am assuming this is not normal. I literally almost passed out when I got up, and my ears started ringing. Fortunately, it is freezing outside and the cold slapped me back to reality. My nurse was concerned about my lack of range of motion, so they've ordered an urgent visit to physical medicine for PT. I am so tired of all this, but I will get through it. Peace to all.
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Oh Kim, I am so sorry that you are having a rough recovery. My understanding was that drain removal is not usually painful (mine certainly wasn't). I'm glad you are getting checked out. Hope you start healing faster now that those annoying drains are out.
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Kim Yes, I'm concerned about any radiation damaging the heart/lung since it is the left side. While told minimized with advanced techniques, not totally out of the question. I'm still juggling with just jumping in with both feet and saying yes rads or letting the clinical trial determine whether I get it or not. My beau has a gut feeling that if I enroll in the study, I will not be selected for the radiation. Just a gut feeling.
So sorry the drain removal was so painful. When mine was removed I was expecting worse. It was quick and I did feel it but it wasn't anything like your description. It is still a little tender in that area if I press. I hope you are fully recovered from it by now. Glad you are getting PT for your range of motion. I'm still tight when raising my arm but can get it over my head.
Pink I believe my armpit lump is a seroma. The plastic surgeon's nurse, the MO and the RO all said it was okay and should get reabsorbed. It may take some time, though. As long as it isn't red and warm, I don't need to worry too much about it.
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Kim, I am so sorry to hear that you were in such pain after your drain removal. Hope that you are feeling better now.
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Thanks for all the support. Today is a new day. I slept better having the dreaded drain out, and my pain seems lesser today. Many of my doctors have testified that redheads have a higher sensitivity to pain. Can I get an Amen?! I am sure Peachy (and others) can relate. Each day is a day towards healing, and I believe that!
Today I consult with the RO and have my DH's Christmas party dinner tonight. I am going to rock my dress/boots and super short hair (without a hat) and no brows (yesterday's draw in was comical). If I overdo the lipstick, perhaps they won't look up.
I hope y'all have a GREAT day!
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oh lord Kim, I'm sorry your drain removal was so painful. I go tomorrow for my post op appointment to get my final 2 drains pulled and my final pathology. My left arm seems fine but my right arm will need some work. I can't start exercises over my head until the drains are out but the skin is super sensitive to the touch and the muscle in my bicep is so tense that I have a very hard time straightening it all the way. I'm hoping this resolves over time.
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I'm getting my port removed soon. The surgeon who put it in did it in the hospital while i was sedated. However, I'm told she will take it out in her office with no sedation. I'm freaking out, will it be painful? Did any of you have yours removed this way?
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Hi all,
Glad to hear everyone is healing from surgeries etc. I had my surgery back in April but I can empathize with everyone's symptoms and pains. My left arm from 2 'mere' lymph nodes being removed is still numbish. It just feels funky. It does get better though and that is a good thing.
Kim - so glad they removed those lymph nodes. Having them out of your body must feel good. Those drains are not fun and I am sorry yours being removed caused you so much pain. Sounds like you are moving forward by celebrating with a party and getting dressed up - that would work for me too!
Peachy, hhuey, hapB, moody, pink, Julia, t-sue, Susie - I think of you often and am thankful to have you to help me through.
Susie - I have heard that the removal of a port does happen in the office under no sedation. Apparently it is so close to the surface they are supposed to come out easily....I hope you do great (I am sure you will).
Prayers to all,
Sue
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Have fun being merry tonight Kim!! Rock those boots!! Somehow I think you will bring much joy to the party.
hhuey...good luck with your drain removal.
Susie...I did not have a port so I can't be of help. But I would hope they would not remove the port in a way that is known to be painful. I know pain thresholds vary but I would trust them that this is normal and tolerated.
Lilsuzq - nice to see you and glad you are recovering nicely. April seems so far in the rear view doesn't it? It was the start of my roller coaster ride.
I went to PS office today for another fill. The nurse checked my range of motion and thought she felt some cording down my arm and referred me for PT. I go Thursday afternoon. She said if I am going ahead with radiation, I have a little more work to do to be able lay with my arm over my head comfortably. She encouraged me to keep massaging at home and that 2 warm showers a day can help.
She also put in a request for a lymphedema consult. She said sometimes (not always) cording may indicate the start of lymphedema. I feel a little heaviness in my tricep area but I think it's more from lack of exercise for so long things are going soft on me.
On a good note, I feel like the neuropathy in my toes is not quite as bad. Still there, but I can actually forget about it for stretches of time. I'll take these little victories whenever I can!!
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Lilsuzq, great to hear from you! Thanks for checking in.
Kim, loud lipstick works wonders with our super short hair! Have fun at the party.
Susie, my surgeon also told me the port removal will be in-office. I'm sure they numb the area. Let us know how it goes. Mine comes out in June when I finish herceptin.
Hapb, I'm sorry you have financial worries - you don't need another stressor!
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Sue, Sorry your area is still funky. Mine seemed to do quite well from the first surgery. I am sure through therapy, I will get back to some normalcy - a new normal. I would just like to be able to raise my arm as before. Right now, it is a tad scary thinking it doesn't work as it did, but it will in time!
Susie, They removed mine under sedation, because I was having the remaining lymph nodes removed. My BS said it would take like 30 seconds to do, so trust your doctors on this. I am sure it will be ok. Hugs. Are you doing ok?
Did anyone ooze (clear) out of the drain "hole?" I was surprised after I took off the gauze yesterday (per nurse's instructions) how much I oozed throughout the day. She said to leave open, but I had to put a bandaid on to see my RO. Glad I did, because it even saturated a big spot on my bra. I left it open last night and threw on an old, soft t-shirt. Maybe I should message my med team.
RO appt went well. I will do my mapping for radiation on 1/2/18. Then I should do the trial run the next week and start. They will do 6 1/2 weeks. I am getting some boosters at the end. She said how my whole medical team was so surprised how mine BC kept surprising them (size, lymph node involvment). I told her none more than me!
I should be all done by the end of February. That is not that far away. I remain hopeful the end is in sight. Funny how they say they will "tattoo" the area for radiation. I told my DH I am getting tatoos. (He didn't go yesterday, so I recorded the meeting.) Then i said they were the size of freckles...ha You brave and beautiful ladies have a great day!
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Kim, it looks like we will be on a similar radiation schedule. I have completed simulation and will do verification the Friday before New Year's. Then 30 treatments, maybe 5 boosts at the end. I'm anxious to get this show on the road.
Happy Wednesday to all!
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So I went for my post op appointment..got those pesky drains out, incisions look fabulous, and pathology looked great..no risidual cancer in my breast, and out of 7 nodes (4 taken but 3 clumped on that came with) only 1 spot measuring .5 mm..I did the alliance trial so I was randomized to only have those sentinel nodes taken and have radiation as opposed to the full 2/3 nodes and radiation...so happy my body responded so well to chemo that it killed just about everything..will have to be proactive though with my right arm and wear a lymphoma sleeve on plane rides, long car rides, and lifting heavy things but I'll take it....
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Kim I did have some "ooze" after drain removal but not enough to saturate through a band-aid. I think the more you move, the more you will tend to ooze. As long as it's clear, I think it is fine and your skin will close up soon enough. Massage that spot though, when it does close to help move the fluid build up along. Sounds like you have a good plan in place to start 2018 and cause for real celebration when Spring arrives.
hhuey WooHoo!!! Glad you had a great response to chemo. ER-/PR- seems to really 'dry up' with treatment. I had only 4 sentinel nodes removed and my MO nurse did not recommended a sleeve unless I present symptoms of lymphedema. I specifically asked since when life gets back to normal, I may be flying 1x a month (short flights) and she said that should be fine but to pay attention. She said more importantly for me on flights/long trips etc. is to get up and move due to risk of blood clots from Tamoxifen. My PS nurse, however, put in a request for a consult with a lymphedema specialist and I'm glad about that.
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Kim, you are funny, thanks for the smile!
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Hershey, We can exchange notes on how things are going with our Rads. I expect it to go fine. Should we start a January Radiation thread, or do you think someone has? I can take a look.
hhuey, Celebrate! ALL good stuff. Ringing a bell for you! Lots to celebrate this season.
Peachy, I have a hard time sitting still, so I tend to ooze more than I would like. It's a bit freaky. Glad to know it's "normal," though. Sounds like lots of positives for you!
Loving all the good news coming in. Let's keep this going into 2018 and to infinity and beyond!!
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I am always glad to read the comments the women on this thread write. So much support for each other!
I am from “Starting chemo in October 2016" board and contributed on your board months ago regarding Nail Envy which had helped me keep my fingernails (though none of my toenails). I had chemo, then surgery, then radiology and am now finishing up the last few of my 17 Herceptin infusions- only have two left). My entire treatment from beginning to end will have taken 16-17 months in total. I still have my port but will be happy to be done with that at the end of January. I'm on Exemestane as an estrogen blocker, began that about 6 weeks ago after side effects from Femara. I have s/e’s with exemestane too, but will have to get used to them.
For those of you beginning radiation soon, it will be done before you know it. It will be behind you. My wish for you is that your techs are as kind and good as mine were. Kindness goes a long way in getting through something like this. And a sense of humor. I was lucky to have medical staff who had both.
I guess what I want to say is that you, too, will be able to put this behind you and move on. Not with your old life. But a variation on it. You'll learn to accept that you are different physically and emotionally. And you'll be proud of yourself for your journey - no matter how much you felt sorry for yourself or complained or had negative thoughts, you did it. You did it. My very best wishes to each of you
Nancie
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Hap, my oncologist encouraged me to get my flu shot 'after' reviewing my chart.
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peachy- so glad they are setting you up with a specialist..no sense in taking a chance especially if you will be flying soon
Thank you Kim..hoping those drain spots stop oozing soon..Hapb I am always asked if I got them shot but I decline..I don't care what they say but they shot always makes me feel crappy (achy and tired) and I don't need anymore aches right now
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Hap, my onc nurse gave me a flu shot the day I asked about it. She said that all the MOs in their center want their patients to have it unless their counts are particularly low.
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I had my flu shot on my off week from Ibrance.
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Nancie, Thank you for your positivity. I am glad your long journey with Herceptin/port is almost over. You are a great testament to us all, too! I use the Nail Envy still, so thank you! I didn't lose any nails, but the discoloration is more than halfway grown out on fingernails. The two big toes still have lots, but they will get there. At least those can be painted if need be when spring rolls around. The happiest of holidays to you and a healthy new year!
HapB, I got my flu shot right after my last chemo infusion. I had no ill effects. I have had some in the past. Thankful for that this year.
Feeling some better today - less pain and a little more range of motion. I had my first post-surgery mysofascial therapy. Felt good. I'm addressing Christmas cards and going shopping later. Much of the gifts are bought, but some are not. I typically have always enjoyed a last-minute rush. Not as much this year, but maybe I will get into it once at the mall.
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