Who is starting chemo in September 2016?
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kd, it's a blood test. My doc never used the terminology until last week so you're not alone in just learning about it. There are different tests; my doctor used CA 27.29. I found this link helpful: https://www.oncolink.org/cancer-treatment/procedur....
Edit: By the way, don't worry if your doctor never brings it up. Not all doctors use tumor markers because they are very unreliable tests. Even my doctor said that I shouldn't put too much stock in the results.
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Surgery tips - Put high use items on lower shelves for easy access. Pack a small pillow to put between you and the seat belt on your way home. Get non-child proof caps for any med bottles. Use paper and pen to keep track of meds and times taken. Wear comfy, easy on and off clothes. (I found a soft hoodie with internal pockets for those pesky drains.) If you have a tall bed, use one of those plastic one-step stools to help you get in and out. Do your stretching exercises, once your bs o.k.'s it, to get your range of motion back. (My bs had me start prior to surgery.)
In times of stress, do whatever relaxes you whether it's music, books, exercise, meditation, puzzles etc.
You've got this!
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hypatia....thanks!!!
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Bagsharon, love the hair. GonnabePoz- I wish mine was thick and dark ... But with taxotere, I am glad I have hair. Don't worry about tumor markers - my MO at Dana Farber doesn't do it - doesn't believe in them. But Sharon, glad your are cured.
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seq24 - congrats on the untrasound coming back normal. What a relief.
Bagsharon - love the hair pics! I stopped dyeing my hair right when I found out about my BC. Well, actually I got grey hilights to let it grow in more naturally. Now, I think I will be quite grey. I have plans of dyeing my hair lavender as soon as I get more hair on top. Because why not have fun?
I wish my doctor didn't do anything with the tumor markers. Mine are still slightly elevated, so even though the CT scan came back normal, he still wants me to have a mammo next week. Not sure what that will show that a CT didn't, but I guess he knows best.
I was skipping my rest weeks from Taxol, but my MO wanted me to take one next week, mostly to avoid any permanent neuropathy issues. I guess I can do that. But he also suggested that I might just have 10 Taxols rather than 12. I doubt if that will happen, though, because the next one will be week 10, and I figure he'll just let it go the full 12. Not sure I wanted that carrot dangled in from of my nose when it probably won't happen.
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Bagsharon..thanks for radiation info...I also had shorter course ...my last 4 were the targeted ones.Your head looks ike mine! NO GREY..yet..haha!!
Smiletheu..it took awhile for me to have a full coverage of hair..it seemed to grow at different rates with my side burns and above my ear taking the longest to come in.
I start tamoxifen next Monday.....2x a day for 2 months then to 1x...I'm trying not thinking about side effects because I can't imagine hot flashes being worse! So I will post later how I do..crossing my fingers because I'm not stopping taking it no matter what....I did all the other crap..not letting pill effects prevent me from my continued attack on this cancer!
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Hot flashes may not occur for everyone if that's any help. I took tamoxifen for 5 years after my DCIS bout in 2008, never had them even when it seemed that tamoxifen tipped me into menopause. (Or else amazing coincidence that it took hold just as I started the pills... )
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Thanks Misslil! I am hoping that I am one of those!
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Has anyone had their port removed yet? Mine is coming out on Friday. It will be an office procedure but someone told me it is better as outpatient surgery. I don't even know what to expect with this. The same person also told me there are special instructions for the day before the procedure. I was not told anything. Is it as painful after it's out as it was after it was put in? Mine was put in during surgery 6 months ago, and it was the most painful part and took the longest to heal.
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Seq, I had my uncooperative port removed and a new one put in Friday. I've definitely been sore and was told no lifting anything heavier than a gallon of milk for 5 days, but with some pain pills, it hasn't been bad. The initial port was put in by a general surgeon, but Friday's procedure was performed at an Interventional Radiology facility. I was awake the entire time... conscious sedation. Since anesthesia often makes me nauseous, I was fine with that. Getting rid of the port is a tangible sign that you've persevered through chemo. Good luck!
Lyn
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Emily will keep her port in for 2-3 years per her MO's recommendation. He said if her cancer comes back, it'll most likely be within 2 years after she completes the herceptin. Emily doesn't mind because it really doesn't bother her that much. If there is a reoccurrence, at least she wont have to go through the install again... and her port has been working well.
Sam
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Sam, will Emily's port still have to be flushed regularly? I don't know how that works once regular infusions are complete.
Lyn
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I'm having a weird side effect and I don't know if it is from the chemo or my hormone therapy. My legs and arms itch like mad! The reason I think it might be from the chemo is because of my hair growing back. That's why I'm asking if anybody else who's hair is growing back is experiencing itching?
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Lyn - I assume they'll flush it on a regular basis, but that is a good question for us to ask. Her herceptin runs until August or September. I'm not sure what the plan is after that.
Sharon - Emily hasn't complained about itchiness, but she is way behind you in the hair regrowth department. Seems like that could be a possible SE of hair coming back though.
On a side note, Emily went in for a mammo on the opposite side this morning and was told everything looked normal, yay!
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Great news on Emily's mammogram results, Sam!
Lyn
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Now I can finally feel that chemo is done! Port came out today! The whole appointment took 15 minutes and that included my 6 month surgical followup. Port removal was 5 minutes start to finish. The numbing was the worst part. I have about 7 stitches inside and steri strips on the outside and a gigantic bandage over that. Surgeon said to expect lots of bruising. When I got ready to leave the nurse handed me a plastic bag and said it was a souvenir. I looked inside and it was the port they just took out. Not sure if I will be keeping that. Probably not. Radiation education class next week, post chemo appointment with oncologist and radiation starting on the 13th. So thankful this process finally feels like it is moving towards the finish line. It's been a long haul--for all of us!
Wishing everyone a great weekend!
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Bagsharon - My scalp started itching as soon as my hair started growing back. No itchiness of arms or legs (until I read your post ;-)
Yay Emily and seq24! ♡
Hair update... Now that it is growing, I don't have the suction effect of a bald head to keep the wig in place. I'm constantly checking the status. Right now the hair is so short and sticks straight up, so there is nothing for a clip or bobby pin to catch on. Will have to look into some wig tape or something, because I'm afraid this thing is going to flying off my head at a most inopportune time.
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Congrats Seq24! Happy Dance!!! Certainly has been a long haul. Enjoy the weekend port free!
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Fabulous, Seq! I'm a week out from my port removal / replacement and still sore, but having both procedures done back-to-back and my pesky Fibromyalgia probably made my recovery slower than your average bear.
Lyn
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Oh Lyn, I'm sorry you are still uncomfortable from that. I can't imagine 2 procedures at once along with the fibromyalgia too. I did have some pain last night. I had to sleep in the recliner because it hurt to lay down. Took the bandages off this morning to shower. Felt much better with those off. I still have the 3 steri strips that should be off in a couple of days. I almost feel like there is light at the end of the tunnel. Nervous about radiation as I am very fair complected and am worried about burning/blistering.
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Fingers crossed that radiation goes smoothly for you!
Lyn
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yes to itching! I'm putting it to the hair coming back since I'm still in rads. My skin is dry too, I've been wondering if that is something to do with rads.... yay for the hair coming back but I so wish we could choose what it could be!
yes to head, brows and lashes. No to legs and chin. And my skin has been really good with chemo but is now starting to turn back to my normal. Oily forehead retuned yesterday... groan. Here's a "get over yourself" story to share. Apparently getting called out by a 7 year old boy the first time I wore a wig in public wasn't enough for the universe. I've been trying to get a job now that chemo is done. I always wear the wig to interviews, just to not have "that" discussion yet, and think I can fool certain folks for those few minutes. Got a call for an interview for the next morning for a designer position, they found my resume and was interested in speaking with me. Not expecting to get it but will go for the experience. Falling asleep that night it hits me, it's a hair and beauty products company! And I have no hair! And I usually wear fake hair! And it's a NATURAL hair and skin products company! And...!!!!! Seriously?!!! Yep, my luck. Laugh on whoever came up with this one. Freak out commence. Had radiation before heading to the interview and took a poll of the ladies waiting to get zapped, all of whom couldn't believe my luck either but talked me off the ledge. Favorite scarf on my head or wig in my bag? Went with the scarf, nailed the interview and didn't get the job. Can only guess as to why, head covering or ability or fear of the future availability. But got another experience like none other.
Happy weekend
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CC2016, hey, you had the confidence to nail the interview with a nekkid head. I'd put that in the win column and I'll bet you rocked that scarf!
Lyn
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SLAMMED with a major setback. Finished chemo on Dec 23. Had only gotten 3 rad treatments when my RO gave me two days off to recover from another minor medical procedure. Before I could start back to rads, I was hit out of the blue with chest pain, general soreness, and inability to take a deep breath. Had an appointment with RO anyway who also found tachycardia. He sent me for a CT scan with contrast to look for a suspected pulmonary embolism (PE). Scan found one and I was bundled off to the ER where they started a heparin blood thinner IV drip, and told me that the scan also showed pericardial effusion. They ran an EKG and performed an echo cardiogram. Several hours later I was admitted.
Turned out that the PE was very small and didn't concern the pulmonary specialists overly much. They wanted me to complete the blood thinning treatment - heparin IV in hospital and continuing with Eliquis for 3 months at home - but didn't think it was large enough to cause any symptoms. The bigger concern was the fluid around the heart. It was causing the tachycardia and affecting the function of the filling chamber. Surgeon recommended a pericardial window procedure which he performed the next day. Then two days in ICU.
Immediate danger past, the biggest concern was now whether the pericardial effusion was caused by my breast cancer! The fluid and a sample of the pericardial tissue was sent to pathology. The surgeon said it would be a week before we got the results. Fortunately, my MO stepped in, saying that he didn't have time for that, and he pushed for earlier verbal results. On my way out the door of the hospital, the oncology NP came by to tell me that the pathology was negative. *whew"
I'm feeling adrift. I have a follow up appointments to see MO, heart surgeon, start cardio rehab etc. But I don't know what caused the PE or the heart fluid. I don't know how this setback affects my rad treatments. Terrified that rad, even just 3 treatments, triggered the heart issue. I NEED rad treatment but obviously can't risk destroying my heart
Oh, and MO took me off tamoxifen since it is an added risk for blood clots. Don't yet know what the new plan is.
Ugh! I feel like I did when I was first diagnosed and waiting on results and a treatment plan. No idea when I can return to work even. The hospital was a damn circus and I don't have any appointments to start getting answers anytime soon. Guess they wanted to give me time to recover at home but I can't handle the abyss of the unknown.
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Leydi, sorry to hear that - sounds like quite the rollercoaster at a time you don't need (any more of) one. Hope things steady out for you the rest of the way in.
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Leydi so sorry your having to go through all this again...hope they find out what the cause is so it can be fixed.
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How frustrating, Leydi! That must have been very scary and now you find yourself in limbo, not knowing whether you'll be able to move forward with your radiation treatment. I'm so sorry.
Lyn
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Just recovering from my bilateral mastectomy. Being able to do nothing is very difficult. I go back to the surgeon on Wednesday...hopefully they will take out a couple of drains. I have been sleeping in a recliner the last couple of nights bc I cannot lay flat. I am doing better than I originally thought I would be doing....my husband has been quite the rock. I worry about him and how he is doing. He tells me that he is fine but it has to be hard for him to always make things look like they are ok.
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Dennyj- I'm i the same boat as you- just got 2 drains out today (they won't take all 4 out at once I guess- bummer!). Looking forward to possibly getting the other 2 out Thursday. Very uncomfortable and sleeping stinks. I'm on a wedge in bed with pillows.
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Just had my surgery yesterday, was able to come home in the afternoon with 2 drains and 2 Rx's. First checkback with one of the surgeons on Thursday, hoping at least one drain can come out - doubting the other will be ready unless it slows down a lot. Pathology report back apparently will not come back quickly.
Overall surgery went well, they took out quite a bit of area which is good to avoid recurrence but cosmetically I have the feeling it may look like a shark took a big nibble out of me in that area ~
Feeling a lot better as far as chemo side effects. No nausea to speak of since the holidays, heartburn and D issues that were still bothering me into January appear to be gone. The anemia levels are still bad but up a bit, potassium reading seems back in normal range, and I feel a lot better and able to do things. Still have the neuropathy feeling in fingers, feet - have been warned that could take several months to dissipate. Not much to brag about yet in the hair department, except that it's making a visible effort lol. Hoping for big gains in the coming weeks so I can occasionally ditch the scarves/caps/wig for springtime.
Had my second round of Herceptin last week, did not notice any SEs that I could attribute to it which is encouraging for the rest of the Herceptin run that will go through the summer.
Best wishes to everyone as we're going through these next phases of treatment beyond the initial chemo regimens.
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