TRIPLE POSITIVE GROUP
Comments
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Are any of you having a mastectomy after your 6th treatment before starting the year of additional therapy? THANKS!
Finished treatment in May, had my BMX in June and starting radiation Monday
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hi ladies-new to the forums. CDW2020-I will be having a mastectomy at the end of my 6 cycles. I had bone pain but it went away after a few days.
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I finished Chemo 6/22, mastectomy on Tuesday 8/11, then radiation 6 weeks after and reconstruction 6 months after, so 1 down 3 to go
With regards to the mood swings/crankiness, i got mine after my 5th infusion and boy was that fun, could of bite the head of a tiger I was that cranky... so kept away from people for a few days for the sake of their well being lol.
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CDW2020 - I just finished my 6 rounds of chemo. BMX for me on August 24th - no reconstruction. Then I will probably have radiation (they haven't completely decided yet), plus finishing up the year of HP. No bone pain for me but definitely burning in my thigh muscles from the Neulasta. That's a common side effect. You can take Claratin for that and it will help.
Lamloved - I kept DETAILED notes about my side effects every round (daily notes). So I was able to really hone in and tell the MO exactly how my diarrhea had worsened, how many more days a cycle I was reliant on Immodium and prescription Lomotil, how much longer per cycle it was lasting, etc. It was super helpful in that conversation and made them very open to helping me solve the problem. It definitely worked - much better in Round 5 and then Round 6 was almost non-existent. I had only 2 days of it - one only required one immodium to solve. The 2nd time was more of an all day, lots of meds event, but once I resolved it, that was it. Normal since. Glad to see the back end of that chemo!
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Hello, all, I posted this on my July chemo cohort board but meant to post here where more people who’ve completed multiple rounds would see.
Has anyone had the experience of taking Claritin for the Neulasta and then NOT taking Claritin? I had asthma during my first round, which is usually well controlled just with Zyrtec. Since I can't take Zyrtec and Claritin, my MO told me to just skip the Claritin and take tramadol if needed. My legs were achy but not unbearable during my first round, but I'm worried I'll be miserable this round!
Thanks for your help
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anna - did you take the Claritin and not the Zyrtec last round? The mechanism by which pain from Neulasta is relieved is by the antihistamine in Claritin which reduces edema in the marrow - which is caused by the rapidly reproducing blood cells. If you take Zyrtec in place of Claritin to help deal with asthma you may well get the same level of relief. Claritin was also trialed with Aleve for Neulasta pain, so you could try adding it to your Zyrtec also. I would be sure to start the Zyrtec prior to the Neulasta just like you would with Claritin, and continue it for several days even in the absence of any asthma symptoms so that you maximize the pain relief.
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Thanks so much for your advice and info, JavaJana and SpecialK. These boards are invaluable! I’m so amazed by how much wisdom and knowledge and actual science so many members possess
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Greetings everyone, sorry you are on this board, but you are all in the right place. This was my lifeline when I was going through treatment. And I still keep coming back to check in to see how everyone is doing. Plus I feel like if I don't, it's a curse to myself lol. As you can tell, I would not be the poster child for Living Beyond BC. I'm convinced everything is a recurrence of some kind.
For my Covid time, I was avoiding the hospitals and taking all kinds of care as I figured it is hard to know how your immune system is compromised even years after treatment.
And then....I develop a ureter stone (I've had kidney stones before). Ended up in the emergency room, then the surgery center for a stent, and then back again a week later for stone removal and then the urologist office for stent removal. I did it all and managed to come out without Covid.
And I just want to say, I am not sure which I would rather do..chemo or a ureter stent. It was pretty uncomfortable for ten days.
So now, for my quiet year before medicare, I blew through the deductible and the out of pocket lol. Everything from here out is covered 100% so when I see my oncologist in a couple weeks, I am going to tell her to order whatever she wants lol.
I did not have Neulasta, but for those of you with some joint pain, try l glutamine. It helped me a lot.
I had diarrhea a lot during treatment, but after my mastectomy, I had constipation so bad that I thought I would end up in the emergency room. I'll take the diarrhea any day. To this day, I have it somewhat. I take Cymbalta for joint pain and that seems to trigger an episode once a day.
Sleep is an issue also. I have a prescription for Ambien which I try not to take too often. My daughter who lives in LA usually, has been home mostly for several months now as her job is remote for the most part and everything was shut down there. She convinced me to make a run to Illinois for some edibles. I swear to you I have never slept better in my life.
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I took Claritin the day of neulasta and a few days after and it worked for me. No pain associated with the shot. The last two TCHP I started having muscle and joint pain, but my onc said it wa from the chemo. It decreased when I finished.
Fluffqueen - thanks for stopping in. I think one problem with all these boards and FB pages is that the successful people drop off once they finish active treatment, so we hear a lot more of the recurrences and bad results. I always appreciate when positive outcomes weigh in. Sorry about the kidney stones and all the complications this summer, that sounds awful. And I agree with you that overall, constipation is the worst. As long as the diarrhea isn’t so uncontrollable that I can barely make it to the bathroom. I am done with TCHP and DMX, getting ready to start radiation followed by 14 rounds of Kadcyla and hormone blockers. I’m going to hit my limit for insurance again next year too, so hoping to get my Diep Flap reconstruction before the end of 2021. That’s still a long ways away, I hate thinking of it because it bums me out a bit how long I’ll be in active treatment/reconstruction
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@fluffqueen - I echo Fab4Mom it's always good to see people that have reached end of treatment and, have gone awhile without recurrence. Sorry about the kidney stone.
For those of you who have done the Glutamine for neuropathy was is 15mg 2xdaily?
I'm starting to get the tingles/numbness in my left foot again. I'm still taking the B6+ALA but, I want to ask my MO about Glutamine when I see him next week.
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fluff - my girl!!! Good to see you, but sorry about your kidney/ureter woes, that is a bummer. Raise a glass (or an edible...) to a better last half of the year for you.
morrigan - I iced to prevent onycholysis (nail loss/lifting) but didn't have a lot of faith in it for neuropathy. For that I took 30g of powdered L-glutamine in 3 daily doses of 10g each, dissolved in a cold drink that lacked as much acid as possible - I couldn't handle it in water, it had to have a flavor of some kind for me to get it down. My understanding is that heat and acid can denature it. Don't put it in food - I tried it in applesauce - it was a no go - tasted like I was eating chalk. I also took a B6 tab, and Acetyl L-Carnitine. I did have neuropathy with each infusion - fingertips, bottoms of feet and my tongue. It resolved after each infusion, before the next one, for the first half. After that it stayed, but was mild. I continued with that supplement regimen PFC and all of the neuropathy was gone by about the 90 day mark. No residual issues other than I have an outer limit of time spent in high heels, but that may also be age-related, lol!
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Thanks Special K - my neuropathy was pretty much gone once I started taking the B6+ALA and, that was cycle 3 of TCHP.
It just started back last week, I did miss taking the ALA one night. However, I'm guessing it's related to the Kadcyla at 30 min instead of 90. I'm going to get my next treatment at 30 just so it doesn't interfere with my scheduled radiation appointment but, after that I'm going to request a 60 Min drip.
I'll ask my MO about Glutamine on Monday and try it for the next cycle ( I already have the powder, just need the OK).
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To prevent neuropathy, I iced through every Taxotere. I did start to get a little in my fingertips after Round 4, so I upped my B vitamin (double dose. I was already doing L-glutamine to help with my diarrhea. My naturopath had me on the powder and I took a triple dose the day of chemo, and 3 days after. Then stopped until the next round. I finished chemo two weeks ago and the fingertip stuff is almost completely gone already.
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i iced my feet for all 6 rounds of Chemo and my hands for 4 rounds of Chemo. I have no issues with my hands but I've had pins & needles in my feet from time to time. It cleared up with the B6+ALA but, Kadcyla might have kicked it in again.
Yesterday I remembered I have a patient portal so I sent a message about the Glutamine and got the OK. Started yesterday afternoon...I swear it's working. I had a little pins & needles in my right foot when I did my walk this morning but, that's about it. 😁
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I wish I had joined this group before chemo! I didn't know about the side effects of neuropathy and nail lift, so didn't ice or take anything to prevent neuropathy. After my 5th cycle of TCHP, I had foot drop and my nails started to lift. I was able to resolve the foot drop with physical therapy, and the therapist indicated that it usually goes away (foot drop) after 4 months of no chemo. Then, when I had my lumpectomy, I awoke to the inability to move my left hand!! That was very scary, but resolved after 12 hours. (Yes, I got an MRI and a CAT scan to check for stroke.) Any recommendations for nail lift?
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gundersk - I iced all during chemo but did lose a pinky toenail that grew back quickly, and had issues with my wedding ring fingernail, which had a previous injury. All other nails had no ridges, no lifting, no discolored areas, and no Mees lines. The one fingernail with problems would not stop lifting even long after chemo and eventually had to be completely removed. I would recommend several things - cut your nails as short as possible. Any length will exacerbate lifting as you move through daily life because the nail is not firmly attached to the nail bed and bumps against them lift further. Get some clear nail strengthening polish and paint it on often, I used OPI but Sally Hansen makes one too. Every other day or so - or twice a week, soak your nails in a diluted vinegar or bleach solution for a few minutes to help with any fungus or bacteria that may get trapped under the nails and make things worse. Wear gloves when doing housework or dishes to help keep things dry underneath the nails. If none of this helps go see a dermatologist - that is the specialist best suited to deal with an ongoing nail problem. Good luck!
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Thanks Special K! I did cut my nails very short, but will add the nail strengthening polish and gloves for housework. Interestingly enough, I didn't see much damage on my toenails, just fingernails on my middle finger and both index fingers. I think I need to do the gloves and that should help, as well as the soak. You are such a great resource!
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Mees lines! I have those on my fingernails and never knew there was an actual name for it. They are very faint. Hoping they go away. No lifting and my nails are strong - slight discoloration in my toes but that is already fading. I take collagen daily, so I think that really helped. And I was religious about icing.
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gundersk - happy to help!
wahoo - one of the reasons I already knew the name is my predilection for crime tv and reading material - where people are frequently poisoning each other, lol! Your Mees lines should just grow out as your nails grow. With the nail I had completely removed it took about six full months for the new nail to grow from cuticle the full length of the nail bed. I was super impatient and came to the absolute realization that fingers look way better with nails on them! I carried bandaids in my car so I would never be caught in public with the nail uncovered. The good news is that once the nail grew in I had no further issues.
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Has anyone had bad news come back on an echo? I've had two done so far (one as a baseline and one done earlier this week, right after my 3rd infusion). It came back with the results below, so I now have go in for an MRI with contrast on Monday. It freaks me out to think that I'm already experiencing issues, knowing that Herceptin is a year long treatment. The nurse first told me that my 4th infusion would need delayed and I about lost my mind! Another nurse called me back and said no, only the Herceptin would be delayed, if anything, based on results.
Study Result
Narrative
· Normal LV size with mildly reduced systolic function and with mild
global hypokinesis.
· Mildly decreased ejection fraction at 45-50%.
· Normal LV wall thickness.
· Grade 1 (mild) left ventricular diastolic dysfunction without elevated
left atrial pressure.
· Abnormal global strain (-13.2%).
· No significant valvular abnormality.
· Compared to the prior study, there is mild change. LVEF is now mildly
reduced with abnormal global strain.0 -
i think they just take a break on the Herceptin. I've heard a 3-6 week break usually gets the heart back to normal. I haven't had any issues yet but, my 3rd Echo is about to be scheduled.
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There have been a number of members on this thread over time who have experienced a delay or discontinuation of Herceptin due to a drop in LVEF. Some drop is expected, but they are generally looking for a 10 point drop, or a 10% drop, or a drop below 50 on your quarterly ECHO or MUGA when making a determination on continuing with targeted treatment. I say generally because these type of tests are performed by humans and they are somewhat subjective in terms of placement of the cursors for measurement. Sometimes you can delay and then resume, some have to discontinue completely, and some continue with cardio protective meds.
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My next-door neighbor had to discontinue Herceptin because it damaged her heart, but she had a pre-existing heart condition. She made it through four TCHPs before she had to quit. She won't be doing the full year of Herceptin, either. She's just hoping for the best.
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I'd guess that the conflicting messages are because two different people interpreted the results. Heart damage is one of the possible SE's of Herceptin. Try not to panic until you see your MO - or maybe call him/her or your nurse navigator.
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I had an appointment with the cardiologist today. He put me on 3 heart meds. I will have an MRI and EKG on Monday, followed by another echo next Thursday. Those results will determine if I can continue with Herceptin as planned. He said he's hopeful that there won't be a delay in my treatment. Unfortunately, he said that those heart meds could be something I am on for the rest of my life. Ugh, now on top of cancer I am worrying about my heart as well. Some days it's too much - Today is one of those days.
I appreciate you ladies offering feedback and support
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If it is from the herceptin, that is usually reversible with holding it. Fingers crossed!
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Smichaels - you are right. Sometimes fighting cancer is a b_____! Try not to get too far ahead of your skis.
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All -
Had my mastectomy yesterday and am waiting on the results of the breast tissue biopsy - if they have to switch me to Kadcyla - looking for input from people that have made the swap from Herceptin in terms of any side effects, issues, etc. Thanks! Just want to be prepared.
Kris
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wahoo - congrats on getting the surgery behind you, fingers crossed for a good path report. Here is a link to a thread for exactly the situation you are asking about - switching to Kadcyla for residual cancer after neo chemo:
https://community.breastcancer.org/forum/80/topics/874047?page=1
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I'm on Cycle 3 of Kadcyla and, haven't had any major SEs, I feel fine.
My WBC and Platelets have dropped and, I had to get 2 shots of neupagen last week to boost my WBC/ANC.
I got a slight fever (99.4) once each cycle (around day 4 or 5). I took Tylenol and, it went away. I got a nose bleed once during Cycle 1 and, a foot cramp once during cycle 1. I have some minor neuropathy in my left foot, I've been taking Glutamine and that does the trick
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