Starting chemo February 2018
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My scans were all clear, hooray, now they have to figure out what they're doing surgery wise then radiation and herceptin infusions every 3 weeks for 1yr so I still have a ways to go.
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deb- yippie! That’s great news. Now just take a long exhale and get the rest figured out. I’ll be here for the rest of the year getting my Herceptin/ perjeta infusions
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so happy for you Deb!!!
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Yay deb! I’ve been worried for you.
I didnt seem torespond to the neoadjuvant chemo/herceptin/perjeta either. Did your dr have any reasons for you?
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Great to hear Deb!
Just so you know, I had the ALND on Monday. All 20 nodes that were taken were negative! I am so happy they were clear but sad that I needed the additional surgery and now have increased risk of lymphedema. We wouldn't have known if I didnt and at least I know I don't have anymore positive nodes in my body.
Good luck in whatever you decide!
Laura
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moth -it's time to celebrate. Reclaim your Thursdays. You didn't have it easy but you got through it.
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I’m so happy to hear the February group has many things to celebrate! Great news on clean scans Deb, and clean lymph nodes Laura. What a huge relief, right ladies??! Moth I’m so happy you are reclaiming Thursdays now that chemo is over. Do something fun and then tell us all about it 😀 Lollette congrats on securing a teaching job, even though it sounds like you have your work cut out for you it might be a great new venture for you. Jo it’s great to hear you are feeling stronger every day. You are such an inspiriation- I might even follow your example and try meditation. -I feel it might help with the cancer anxiety.
Laurie I hope you and your medical team can get to the bottom of your memory problems. Please keep checking in with us and let us know how you are doing. CBok I think my onc is going to go over the things I need to do to keep recurrence at bay. I’m certain regular exercise will be prescribed, which means I’ll have to be more consistent with that. The dietitians at my cancer center have already stressed that we patients should be following the Mediterranean diet, so I expect the onc to give me direction on that. Both things will mean I’ll have to tweak my lifestyle, and I’m on board with that. Colleen what you said about googling bits of info and feeling down about what you are reading really resonated with me. I do the same, and I call it “going down the rabbit hole”. I get a little obsessive about whatever cancer thing I’m researching, and the. get more and more depressed. I have to take a break and seek out the things that make me happy to get over that unhealthy mindset.
Ladies, I have some crazy news that you are all probably going to find unbelievable: Due to my heterogeneous cancer I will be starting AC chemo very shortly. The great news is that the HER2+ portion of my cancer was obliterated by the previous chemo and immunotherapies I just finished (TCHP). Yay!!! -They discovered that the HER2+ cancer was gone by sending a sample of the tumor I just had removed to the CA lab to be tested for HER2 amplification. This is not part of my center’s normal lumpectomy pathology, but in my case it was done as they needed answers as to why my tumor only shrunk a small amount. There was still more cancer left (the HER2- one it’s assumed) after 6 rounds of chemo than the onc and the tumor board felt comfortable with, so they had to think long and hard (and completely out of the box since this weirdness has NEVER happened before at my center) about how to address this, and more and different chemo is the answer they came up with up. Boo.
This has caused tears, because I don’t want more chemo. I already rang the bell dammit!!!!!! Thank goodness it’s only 4 rounds, every 3 weeks. But it’s different chemos, so I don’t even know what to expect, it’s like I’m a chemo newbie again. I’m a little scared, anxious, disheartened, but I’m ready to face this and get it over with. As always I’m grateful for the great (and very thorough) care I’m getting from my medical team, and for the great support I’m getting from my February Ladies.
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Rockcity- Thanks for the info. I am ready to complete this part of treatment.
Moth- I am happy to hear you completed chemotherapy. It takes time to readjust. Enjoy the free time.
Take care everyone.
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Wow, lots of news this week. First off Deb! so glad for you, you must feel great relief having normal scans. phew.
Moth, great that you're done. Believe me it does feel great reclaiming your life. My biggest surprise was how quickly I started to feel well again, so I wish the same for you.
22 fightfor I am so glad that the her2 part is gone. I know that the treatment for her2 can be difficult so at least that's out of the way but man! Sucks that you're back in the chair again. I'll be cheering you on from here.
Colleen, sorry you didn't have a noticeable response to chemo. Must be hard to hear. I didn't get to find out if there was any response since mine was adjunct chemo. Maybe it's easier not to know?
Cbok my electric mountain bike is pedal assist which means to get power you must pedal. on top of that it's full suspension so it's built for the back country trails. Now I just have to argue with the town about allowing e-bikes everywhere as they are putting restrictions in. Anyway, I love it and it's a way for me to get out and enjoy the sport that I love without feeling super out of shape from the health issues.
Also, I too am now considering changing my lifestyle. I have always exercised quite a bit but I lack discipline in what I eat and I probably drink too much. Man I like having my nice glass of wine and or a beer here and there but it has turned into a daily habit and from what I understand, not great for cancer. I'm about 25 pounds off my ideal body weight as well. I will definitely need some strategies to motivate me to give up my hedonistic lifestyle. lol.
And finally, I had the EEG today to check my brain. I was nervous because my friend who had epilepsy told me that the test can provoke a seizure. The technician saw that I was nervous and told me from what he saw my brain looked fine. That relieved me. all went well. I'm guessing that the amnesia will remain a mystery.
Anyway, all, to everyone here good luck with your treatments and hopefully the SE's stay away.
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22fightor- it seems like you have a great team working with you. Your situation with HER2+ and HER2- sounds unusual. Her2-positive is gone yet you still have a minimal amount of her2-negative. Sucks about having to go through 4 more rounds of chemo. On the bright side this will probably take care of your problem.
I stay away from the research articles about recurrences and survival rates. Knowing myself very well I know if I start researching my type of cancer I will become over-analytical and drive myself nuts. In this area I have to put my faith in my doctors. Do not get me wrong I still come with plenty of questions for my doctors. LOL
Good luck to all of you. Have a wonderful weekend. I'm doing a 5K tomorrow morning at 7 a.m. My toes are not 100% healed but good enough.
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Ladies who were on AC chemo and had nausea: when did it start for you, and how long did it last?
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22,
I didn't have the hoped-for response to neoadjuvant treatments either, but I already had AC prior to my 12 weeks of taxol with herceptin and perjeta every third week, so they say no more chemo for me. I honestly wish I could do more, because I'm scared I didn't respond well. It seems like I should still be doing something else.
As far as AC nausea, mine always started the evening of my treatment. The first time I waited too long to take my meds and I couldn't catch it. After that, I knew to take meds the very second I felt off.
My advice to you would be to not wait to take meds at all, even if it's a little earlier than your nurses told you to expect. If you can stay on top of it, it's much more tolerable.
ETA: It usually lasted a week for me, but the severity tapered each day.
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So many news!
22fightfor, I am so sad to read that you have to go through AC after everything. I lost 25 pounds during AC. I did not have much nausea but I lost my appetite and got mouth sores. We all survived AC and I am sure you will too. You will feel off for a week then you will have 2 weeks when you feel better. The good news is that your HER 2+ is gone!
Laurie glad that your EEG seems normal.
Congrats Moth on finishing chemo.
I am done too with chemo. My MRI shows a little something that could be left over cancer or scar tissue due to chemo. Otherwise excellent response to treatment. My surgery is scheduled for August 30th. I will have a lumpectomy. I am glad because in March, the drs were talking mastectomy. I was really scared about the dye injection for the SND but my surgeon did a study about when to inject the dye and it happens that the dye needs only a few minutes to travel and therefore is doing it after the patient has been anesthetized. Yeah! So I'll have a surgery without needle as all the products will go through my groshong catheter and they will put the IV while I am asleep and remove the catheter. For now I am having neuropathy on my feet and hands. Last week it went also up my forearms. During taxol I gained back 13 pounds out of my 25 lost. I am a little sad so I started Weight Watchers this week. I still have to get the courage to do some exercises but I was bad before and now with all my muscle lost, it is harder. I went for a brisk walk the other day and walking up a low slope for 2 minutes caused me as much pain as climbing a mountain, no kidding. My thighs were burning! Someone was talking about the Mediterranean diet and I think this is a good one. My mom will come from Belgium for the surgery. However she will be by herself with school starting for the kids and work for my future ex husband and me. As this was my last chemo, I stopped taking the claritin, I'll see if I have more soreness tomorrow.
CBOK, i also have awful nails that feel sore sometimes. It seems that all of them are lifting from their bed. It seems that we have similar side effects with the taxol.
Everyone, good luck dealing with the next treatement.
Cheers!
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Thanks for the advice Colleen and Lolette. Congrats on finishing chemo Lolette, I know that it was really hard on you (25 pounds- yikes that's a lot!) and I bet you are feeling such relief to be done. Colleen I totally get what you are saying about feeling you should be doing something else, and you will be- you will be getting Herceptin (and maybe Perjeta also?) for the HER2+, and this will continue to work with your immune system for many more months. Prior to finding out the pathology results about whether any HER2+ remained after my first rounds of chemo my onc also talked to me about Nerlynx, which is taken after H&P end and can offer an additional two years of protection against the HER2+. Maybe that would be indicated for you as well? Also I'm assuming that since you are hormone positive you will be getting therapy to suppress estrogen as well and that will work for many years to keep anything that *might* be left from having opportunity to be troublesome. Take heart, and be encouraged.
I had my first round of AC chemo Friday afternoon. They loaded me up with anti-nausea meds in my IV first, and those lasted pretty much until this afternoon. I went through my #1 and #2 prescription meds this afternoon, took a nap, had some crackers, and now I'm much better. The nausea is much more of an issue on this chemo than the CTHP, so now that I know what to expect I will be on top of those meds!!!
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22
I had horrible nausea with AC, lost 25 lbs during it. I took the 2 prescriptions 24/7, had a patch behind my ear and also went in every 3 days to infusion center for IV with pain meds that lasted 3 days. Good luck
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Calee that sounds miserable! What did the pain meds help with?
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22, thank you so much for your encouragement. You are right and I need to remember that I’m still doing herceptin (and yes perjeta) and my onc does want me to do nerlynx when that is through. Adding to that, the hormone-suppressing drugs will hopefully keep everything at bay. Glad you are doing ok with the nausea so far!
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22...it should have said nausea meds were in my IV... not pain...my chemo brain doesn’t always work!!!
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ugh, my fingernails are starting to lift. I got white horizontal lines on them during the AC portion and as they're growing out & approaching the quick, it seems the white is areas where it's not really attached to the nail bed so my quicks are receeding and the nail bed seems to be getting smaller and smaller. It's mostly a cosmetic issue I guess. Hopefully as they grow out it will fix itself in a few months. They are a bit sore though.
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22-I know everyone is different but I only got sick on the first AC round. After that I never had that particular SE again.
For those that are still doing or just finishing taxol and have nail issues- there is light at the end of the tunnel. I hit what I'd call rock bottom with them a couple of weeks ago and now they have really started growing fast (probably normal and it just seems fast compared to the last 6 months). I can tell they are pushing out the bad parts and refreshing quickly with healthy nail.
I had a lot of muscle pain but that is also making huge improvement and I can truly taste my food again.
Plus some legit fuzz on my head and eyebrows. I had completely given up even bothering to draw on eyebrows so that will be cool. They are growing in raven black though which is weird. Whatever- I'll take it!!
I am in a great mood today because my family received good news after a horrible cancer scare this week. My 9yr old nephew had been very lethargic for several weeks and some preliminary blood work got everyone scared that he might have leukemia. They did more extensive blood work and praise God we found out he just had a prolonged case of mono.
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moth hope your nails are feeling better. Mine look all yellow and gross but haven’t lifted yet, knock on wood.
Cbok how scary for your nephew, I’m so glad he’s ok!!
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CBOK i am so glad your nephew has just a "bad" case of mono. It is way better than leukaemia!
I've lost one nail today. I cut them short but that was not enough. It got caught in my clothes.
I am really stressed about my lessons planning. It is going to be a very hard year I feel between the one hour plus commute, kids activities after school, separation and drs appointments i am afraid i will have a burn out. Please send productive waves my way!
Pins and needles as well as numbness still present. Taste hasn't come back yet.🙁
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cbok I'm so glad your nine year old nephew receive good news. What a frightening experience.
It's been 8 weeks post chemo and my hair is growing nicely as well as my eyebrows and eyelashes. I can taste most foods now. There are certain foods that still have a bad taste. I never had any issues with my nails. They turned white but they never fell off. H & P haven't been an issue so far. I am very much aware of the risks of neuropathy. So far so good.
For those of you who struggled with neutropenia, severe muscle and bone pain and other horrible side effects, it's great that most of you are doing so much better now.
Have a wonderful weekend.
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So I had a real WTF moment this morning. I was doing a favor for a friend on the way to work and went to pick up a gift certificate. The clerks at the store seemed...off. One of them looked at me and made a motion with her hands around her head and asks me, "What happened to your hair?" And she said it in the nicest cheery way so I just looked at her in awe and said, "I have cancer". She didn't skip a beat and continued to tell me that her friend (or her, I can't remember) had cut their hair off and gave it to "cancer people". (LOL) The other two clerks didn't react at all like they didn't think that was a completely inappropriate thing to ask of a stranger, let alone a client in their freaking store! I was dumbfounded, not really offended because I could tell she was genuine (if completely clueless), but damn I hope she doesn't say something like that to someone who IS sensitive!! BLESS YOUR HEART!!
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OMG! I’m so sorry CBOK. What an idiot! One day a few months ago my neighbor’s granddaughter came over to play with my daughter, and saw my bald head for the first time. She stared and abruptly said, “You were prettier with hair.” Ouch. But hey, she’s 7 so I forgave her lol. Some people are so stupid!! It makes you wonder how some people make it to adulthood.
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CBOK - Oh man, some people are so clued out about how inappropriate they're being.
I had my stereotactic core biopsy today. Ugh it was a bigger deal than the ultrasound guided one I had on my left last year. I've got big bandages and it bled a long time. But it's done & now we just wait for the results.
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Hi CBOK,
It's hard to believe some people can be so clueless. I've been out without a wig since I could muster the appearance of a very short pixie cut. It's been interesting the different looks I've gotten from strangers on the street. Older women seem to know the scoop and sometimes give me a sympathetic smile. Young women assume it's a trendy fashion statement and tell me my haircut looks great. Once I had a nice chat with a cancer survivor who shared her own story, because she just knew from my hair what I must be going through. I've had a few dirty looks too, but the overwhelming majority has been positive. Honestly, I'm just happy to have hair! If it's good enough for the likes of Vogue, I am ok with it too.
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cbok- I'm with you. Sometimes you have to shake your head and just think Clueless. I'm on the other side of the coin the looks of sympathy used to bother me. A few days ago I was at Home Depot and contemplating the upcoming renovations on my house.. I didn't realize I was blocking a parking space until I heard a gentleman scream at me. He screamed "don't worry about the cancer killing you I will if you don't get out of the f---ing way'. I laughed and apologized for blocking him. He also started laughing and apologized for his comment. If a similar incident had occurred right after I was diagnosed I would have probably burst into tears. Unfortunately when I'm focused on new projects I can get distracted. It served as a reminder being treated normally doesn't always mean being treated nicely. LOL
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Our fight against cancer has made us stronger. Insensitive words from others may sting, but will not break us.
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Wanted to share the good news that my biopsy on the right breast came back benign!
Other than that, I've done 3 rad treatments out of 20 & so far it's been no problem. Hope everyone is well!0
