Chemo Starting August 2019
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Heartshapedbox, I like your idea about giving Kadcyla a try, while knowing you can change your mind if it’s too much. I’m going to think in that plan and see if it helps me muster up the courage.
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I have a meeting with MO tomorrow just to ask any and all questions about my treatment/Kadcyla. So if anyone has questions, write to me here and I will include your questions so we can all learn!
One of my questions is what is the benefit of Kadcyla if I do not complete the 14 cycles-
Shelligirl and heartshaped - looks like we are in the same scary boat. I have those some concerns - an entire year of chemo sound awful! Don't know how I can handle not being me for so long. Such a strain on the family. But some people say acting on the doctor's suggested regiment is choosing life. If we do indeed gonon Kadcyla , we have to remember to live simultaneously - on the days we feel good - go for a hike, dance, eat ice cream, shop, we can't forget to do that which is pleasurable to us. (My pep talk to myself)
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Hey everyone, I know it's been awhile. I hope you are all doing okay. I will read back through some messages I have missed !
I feel like I am getting out of that post chemo funk finally ! I was having a really hard time around the holidays. I started seeing a therapist and getting more acupuncture. I also began reading a lot more and spending more time offline. I also joined a ymca and began doing yoga and even started strength training now ! I just got a new job that starts in a couple weeks. I got my prostethics (I had the double mast with no recon) and I love them. My hair is growing a lot more now - I'm at 87 days post chemo !
The scariest part of all this post chemo life, besides the hopelessness, was starting tamoxifen. I finally started about a week ago and everything seems to be okay. My hot flashes are very manageable now, not sure if due to tamoxifen or just the space between chemo and now. The only annoying part is waking up in the middle of the night (like I am awake right now writing this) ugh. I was super worried about taking it, but thankfully I am not having any bad side effects yet besides a couple headaches and constipation.
I'm looking at having to have a full hysterectomy in the next 2-5 years sooo I'm hopefully going to be able to have a couple more years with all my bits attached still and I'm going to try to enjoy my year now by returning to Alaska in May to work again and then do a couple weeks in Europe for vacation before I go back to school to become a hiking guide through the National Outdoor Leadership School.
Thank you all so much for being there for support and sharing your stories. I didn't keep a journal through this time, so I feel like this is the closest archive I have of feelings and thoughts and I'm glad I had a place to share it all.
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In2earth - I love/feel privileged reading your "journal". You are doing so many good things for yourself. It is so great to hear. And as someone who did Outward Bound many years ago as a teen, I am very impressed and excited for you to be a NOLS leader. You are beating this ugly thing and you are an inspiration! Glad the tamoxofen is not too awful.
Me - I start Kadcyla tomorrow. I am still having a hard time accepting that I have consented to it. Don't know to break it to my kids that I am doing more chemo
But I am trying to be optimistic, my doctor thinks that since TCHP wasn't too hard for me, this should be manageable. And my MO did say that Kadcyla it still very beneficial even if I don't finish all 14 cycles.
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HeartShaped, I wish I had full eyebrows! My eyebrows were the last to go, and they're taking FOREVER to fill in.
My hair started regrowing after I switched to Abraxane about Oct. 1. I never lost it all, so I wasn't really believing it was coming in at first. I love it! I was afraid it was all going to be grey, but slowly some brown has come in on the sides and back. The front is almost completely grey. And it's soft. Just recently it's reached the point of covering all my scalp. It's still short enough to stick every which way, and my part, which was high on the left, is now less than 2 inches above my left ear. Weird.
No problems so far with the Anastrozole 1 mg.
I had the port removed one week ago, and the site has bothered me much more than it did after insertion. The removal was also much worse, at least for me. I hope that's not the case for anyone else.
Most food tastes good again, but sometimes I taste bitterness that others tell me they don't detect. I also have lost 6 pounds of the chemo weight. My MO wants me to do either water aerobics or tai chi.
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In2earth good to hear from you! So glad you're feeling better and tolerating the tamoxifen so far! It sounds like you are doing and planning to do amazing things with your life, you're an inspiration! I've been reading about how the phase AFTER treatment is finished is often the hardest, emotionally. Good for you, for seeking therapy and healthy coping mechanisms, and thriving in the aftermath!
Flowerkid good luck on the Kadcyla, I'll be joining you after I finish radiation. I'm encouraged to hear than even a less-than-year-long course still provides benefit; honestly the length of treatment is part of what's making me leery. I'm still feeling pretty beat down at the prospect of SO much more chemo. Keep us posted!
GoMama I'm sorry your port removal has been painful, I hope it resolves quickly! Our bodies bear so much repeated abuse through this process. Our hair regrowth sounds similar, I had grey colorless peach fuzz for awhile, and it's only maybe 1/2"- 3/4" long now but pretty thick and much darker now. A whole lot more salt in the pepper than I had before, especially at the front and sides. It's mercifully laying pretty flat now, but my eyebrows are another matter- they stick out kind of crazily, almost curly! I've only lost a few lbs of my "chemo 15", I definitely need to get more active again.
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You ladies sound like you are doing great!
I'm doing pretty well, I think. I'm on OS and Letrazole and my hot flashes are getting better at night. The thing that keeps me from sleeping is the pain in my knees and hips. I'm trying all sorts of things to work on that. Acupuncture is not helping, but I feel like I still have a bunch of things to try.
I feel happy other than work stress!
I have a revision surgery next week and I'm looking forward to it, and trying not to worry that I'll end up with more things wrong that I started with! Fingers crossed!
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Heartshaped - the length of treatment of Kadcyla is the really difficult part for me too.
I lost the end part of my eyebrows only, but they have NOT started to grow back. My hair growth sounds similar to some of you, comfortable peach fuzz, some white.
I have to honestly say I am not used to being overweight. Lost some weight for a period during chemo when food wouldn't sit right. Post chemo I have gained about ten pounds! I Do eat ice cream 😁, but not enough food for this. The surgeon said that can happen post surgery but it has been a month now. Will see how the next week goes
On target - glad you are doing well. Sorry about work stress!
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flower kid and heartshaped, bravo for being brave enough to try Kadcyla. I wanted to and was all set to at least try and then quit if it was too much, but yesterday sent my MO an email that I was going to decline and stay with Herceptin only. TCHP was so hard for me and I feel in my gut that I can’t take anymore chemo. I will be cheering you both on though and praying for no SEs.
I have been using latisse on my eyebrows and think it’s helping. Waiting on nature for my eyelashes because I still have hope they will come back like they were before. Its expensive but it made them all start growing at once so now I can see where to add a little extra help with an eyebrow pencil and look much less cancerery.
I read here that you need to ask for PT and I’m really glad I did because it’s the kick started I needed to help me start moving again. Thank you to whoever shared that info.
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Shelligirl - it is wisdom to know yourself. Wishing you strength and health with the herceptin!
Radiation simulation was postponed due to the fact that I still can't move my arm over my head (lymph nodes removed). I have a new appt Thursday, but I still wonder if I will be able to move my arm that high. Surgery was 5 weeks ago; my arm and chest still feel very tight and a part of my arm is super sensitive to the touch. My surgeon doesn't want me to do PT for two more weeks.
Has anyone used Marion's magic blanket? - supposed to significantly reduce burns during radiation. Anyways - I love the website I found it on:
Breastcancerdiy.com
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Flowerkid my simulation was also delayed, twice (have it this Fri now), due to not being able to get my arm into position after a modified allixary dissection. I was allowed to start stretching 3 weeks ago, but bad lymphatic cording and axillary lyphedema required the skills of a PT, who has helped me tremendously in regaining range of motion. I was told they like to start radiation within 10 weeks of surgery, which still gave me ample time to delay until I felt comfortable raising my arms as needed (it took two weeks of PT to get time to get to the angle needed, where I couldn't even reach above my shoulder before) My therapist prescribed a set of stretches, but also does hands on manual therapy to help stretch out the scar tissue without damage.
I'm also struggling with a lot of numbness, super sensitive spots and weird nervy jolts, but it's been improving little by little. (The super-sensitivity is helped by very gently stroking the areas to get the nerves used to stimulation) curious about this magic blanket, wish there was feedback on this site but I couldn't find any mention in the search function.
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Heartshaped- I'm glad that PT is helping!!
Flowerkid- I hope they let you do PT to get your arm moving better!
Hang in there ladies, we're all cheering for you!!
I just had a revision surgery with fat grafting. It was just last week, still early to tell, but I think I'm happy with the outcome! And my fat thighs are a little less fat now!! Woohoo!
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Hello sisters.
I want to share my experience with a podiatrist last week (Thursday 2/13), in case anyone else has frankentoes and/or numb toes/feet. I think the world of my medical oncology team, but I think they let me down in foot care. Despite my mentioning that my nails looked bad, nobody at oncology looked at them. I was unhappy with my awful toenails and asked for a referral to see a podiatrist.
First, the podiatrist addressed the neuropathy. She had me close my eyes and used a little soft poker to see how numb my feet are. We discovered I have no feeling at all in one baby toe, which surprised me. So we now have an assessment of numbness, rather than me trying to evaluate it myself. She said that any improvement in neuropathy at one year after treatment is as good as it will get, usually.
Next she addressed the toenails. The growth point (base) of the nails looked okay, but many showed a lot of white toward the other end. They were separating from the nail bed. One nail was like three nails thick, I could not cut it myself and it was pressing against my shoes. She trimmed the nails and used a Dremel and burr to grind down the thick nail. It's so much better now. She also sent trimmings to the lab to be cultured. She said fungi can take hold during chemo when the immune system is compromised. I got the call yesterday, I have nail fungus, so I will be picking up a prescription for that tomorrow. I wish I'd seen her sooner, so I could have started the fungus treatment sooner. I will have to use it until my toenails completely grow out.
She said toenails typically take about 11 months to grow out completely. They grow slowly because they are so far from the lungs and heart, that by the time the blood gets to the feet, most of the nutrients etc. are already gone. After chemo, however, toenail regrowth is usually more than a year.
So my suggestion to anyone who has noticed toenail changes is to ask someone in oncology to examine them, and/or ask for a referral to a podiatrist. I'm so glad I did, my toes feel much better. I really wish I'd seen her weeks earlier.
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GoMama, ugh, so sorry you are still struggling with neuropathy! Did they give you any opinion on future prognosis or treatment? I feel very very fortunate that glutamine kept mine at bay. Bummer about the nail fungus! It can be really hard to beat, even with costly prescription treatment. I had one toenail with it years ago, that I cured with 2x daily application of red thyme essential oil (I know it sounds hippie, but that stuff is pretty caustic and no joke!) covered with regular vicks vaporub, along with super careful hygiene (washed and thoroughly dried feet 2x daily, always wore socks, threw out sandals that had direct exposure). It was a pain to keep on top of and did take the better part of a year, but those measures got rid of it TOTALLY (which many people are never able to do because it's buried so deep in the nail and such a resilient fungus)
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Heartshapedbox, they can't say if it will improve or how much, for certain. I'm just keeping on with the Gabapentin and lipoic acid daily. Mu MO also had me add 800-1000ml vitamin D daily. I'll see the podiatrist every three months, and I'm hoping she sees some measurable improvement next time. I don't want to rely on my perceptions of change, I will wait for her evaluation.
In the good news department, I had my hair trimmed yesterday and it looks less crazy! Also my fingernails look awful, but the fault lines, as I call them, that show when I had the Taxotere are close to most of the nail tips. They've broken off at most of the first fault lines, and are obviously getting ready to break at the second, after that I'll have healthy fingernails again.
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I am Obsessed with figuring out the right pure glutamine powder to get. MO ok with me using it. 10mg 3x/day.
Anyone have a preferred brand they use? Thank you!
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Flowerkid I bought a big tub of "Naked" brand glutamine from Amazon- better price than smaller bottles, and pure fresh 100% glutamine with no "ammonia scent" as I researched was a problem with cheaper brands. Fairly flavorless, kind of chalky and I preferred mixing it in with flavoring like juice or electrolyte packets (since I was taking during chemo and dehydrated)
Here's the link:
Pure L-Glutamine Made in The USA - 200 Servings - 1,000g, 2.2lb Bulk, Vegan, Non-GMO, Gluten and Soy Free. Minimize Muscle Breakdown & Improve Protein Synthesis. Nothing Artificial https://www.amazon.com/dp/B01N41U106/ref=cm_sw_r_cp_apa_i_YwRvEb15DEBM0
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Heartshaped - thanks so much. Exactly what I was looking for..ordered today!
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I got a referral to see a physical therapist who specializes in lymphedema, because I could not zip the boots I was wearing last winter so I knew the swelling was worse. Yesterday during the intake session, she diagnosed me with both lymphedema and lipedema. Thank god she did, because I've been living with edema in my legs for 20 years and no doctor ever picked up on it. My first PT session is tomorrow. I will have a total of 7 (insurance allows 8 visits).
Lipedema affects women almost exclusively and runs in families, so if you have relatives who are bottom-heavy, for example elephant ankles that swell out over the shoes or fat bulges at the knees, or this describes you, please look into it. If it had been caught 20 years ago I would be in much better shape. Now I can only hope to prevent it from progressing to the point that my skin weeps and I get frequent skin infections.
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Go Mama, that sucks, sorry! Glad you are catching it now.
Weirdly, I used to feel like I had pre-lipedema. I am bottom heavy, and for years I couldn't stand massages because my fat areas hurt when touched.
A lot of it resolved when I lost 35lbs. Since you don't normally lose the fat with lipedema, I've concluded that I don't have it, but I really feel you and others who have to deal with it.
Hugs to you!!!
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Heart Shaped, I searched for “runny bloody nose and Herceptin” and your post came up. Have you found anything that’s helped?
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i still have a runny nose on Herceptin , occassionally, but the bloody part did stop when I stopped cytotoxic chemo. That being said, I DID find relief during, which was using a q-tip to apply a thick jelly inside my nostrils- it could be a neosporin type antibiotic ointment, plain petroleum jelly, or a petroleum jelly substitute like the castor oil based Alba botanicals "Unpetroleum jelly" (I used both the first and last, personally, with success)
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thank, heartshappedbox! I appreciate the tip and will give it try.
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thanks heart shaped! Sharing with a friend!
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Hi Everyone,
I'm hoping someone will be able to help me out. I've finished my chemo treatments and had #10 of #14 Herceptin treatment yesterday. The nurse accessed my port and I felt this pressure by my port (on my left side). Also, my shoulder blade on the same side started hurting. They couldn't get any blood return from the port either. The last several times I've gone in for my herceptin infusion, they've had trouble getting a blood return - I end up doing the Hokey Pokey and yoga poses for them to get anything! Anyway, they disconnected the needle and saline and re-accessed again. When she pushed the saline, my reflexes kicked in and i accidentally kicked her! I ended up getting accessed through my hand and having my treatment that way. The area around my port was puffy (but not bruised). They said it was the saline and that the body would absorb it.
I am waiting on a call to schedule an appointment with the Interventional Radiology Department. Should I be worried about an infection or blood clot or anything? At this point, Dr. said I'll just get the last 4 treatments through a different vein in on of my hands. With all the COVID stuff, I don't know how serious this is and if I'll have to wait for them to take out the port or is this no big deal?
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I did go to Interventional Radiology yesterday. The end of the port catheter was pressed up against the side of the vein - almost like it wasn't in the vein far enough. It was at such an angle that getting blood return was not possible and the opening at the end was blocked by the vein making the saline come back up through the port end instead of going into the vein. They ended up taking it all out. I'll have the last four Herceptin infusions through one of the veins in my hands. I hope this information is able to help someone else out.
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CamberChic- wow, the whole thing sounds a little scary! Glad it wasn't a big deal.
I had 4 rounds of TC through arm veins, and it was fine. I got some chemo rashes and numbness in one spot, but it is fine now.
I have an update - I had an implant exchange and fat grafting in Feb. In late March I got an infection in one and had it removed. Bummer! I'll be one boob down for the next 2-5 months. I also had the rare joy of being on the COVID-19 floor the first night in the hospital until my test came back negative.
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On target - that sucks about your implant removal. I do hope you are recovering ok.
Me- still haven't had reconstruction from Jan single mastectomy. Will have to decide what I want. Question: how long does it take to feel much better? It has been 4 plus months and there is still lots of stiffness, occasional pain, Arm discomfort (lymph nodes removed and arm was in a sling) I think I read it could take at least a year to recover fully and then that it never feels quote right, but just checking how my mastectomy area should feel .
I am also taking kadcyla so there is some discomfort, fatigue, achiness, feelings surrounding that..
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Hey Flowerkid- I think it slowly gets better. I now have 1 implant and 1 flat side and my original exchange surgery was Nov 2019 and I got flattened at the end of March 2020.
My arms are perpetually sore on both sides. I stretch and stretch. It has improved, but it isn't back to normal. Interesting that I'm just as sore on the flat side.
I can do push ups, weight lifting, etc. Pretty much whatever.
My armpit with the boob is hard to shave, the arm doesn't go all the way up, and I think cording deforms it.
My armpit and front of my shoulder on the flat side look softer. I can shave that pit much easier and I don't see/feel cording.
My pec muscles don't bother me, but I am aware of the mild discomfort/pain when I move.
I do think I'm doing much better than 4 months ago, and if I could go to PT it would improve faster.
I don't know for sure, but I think we both can expect improvements (especially w PT)!
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On target I think you largely summed it up for me. Although I simply don't bother to shave armpits right now. Elbow length short sleeves does the trick. And I haven't started proper weight training yet. I am doing pt exercises at home that I feel good about.
We can do this!
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