Chemo Starting August 2018
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It's amazing to me how hard we have to work being our own advocate, pushing all the time. I have had 3 meltdowns over this problem since July-- one w MO, one with office of surgeon, and one w naturopath. They move very casually, and they do not take charge, it seems to me. As I put it with my surgeon's office, HEY I am not some person having an elective procedure. I am a person who has been poisoned into a puddle for 4 months. You need to color code the files for people who CAN'T take care of so much, and have a person in your office who sets up the MRI etc, at least for the people like me who lack energy and bandwidth to push.
The biggest flaw in the way BC is treated is that you are weak, sick, and tired but you still have to keep your eye on so many things, and push to get them scheduled, The MO and Surgeon need to be in the same "system."
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Santabarbarian—sending good vibes your way for the upcoming tests! My scalp looked so dirty, too—it’s the hair coming in! My hair is looking ok but the front of my head (where bangs would live) is not filled in yet. It looks crazy like a receding hairline on a bald head.
Kelly-Anne—Chemo and rads together?!? You are such a rockstar. What you’ve been through is a lot. I bet you’re tired. I’m exhausted. I think we all are.
KWilli—that’s irritating that you have to go back to another surgeon because you aren’t doing a recon and now you have to wait. I bet you want that tumor out. I hated feeling my boob with the CA in it. I actually only felt it twice. Post-op right after my implants were out and secondly when my surgeon called me and asked me how big the tumors felt (before I met him). It was a small sized mango in my opinion.
Since June, I’ve had 3 surgeries and 13 rounds of chemo. I haven’t even finished chemo,started rads or hormone therapy or even had my second mastectomy. Ugh 😑 never ending
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MoonGirlJess, when my hair first fell out it was completely "male pattern baldness." My sister said, "OMG you look like Dad!"
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I absolutely have old man hair.
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KWilli - So was it a plastic surgeon who referred you back to a breast surgeon?
MGJ - I had male pattern baldness, too, and looked just like my dad. A cross between my dad and a baby bird, actually. What little hair I have left is very pale now.
santabarbarian - I so agree - when you are going through cancer treatment, you are at your least capable of tracking down and coordinating everything. I just had my fourth surgery since June. I'm tired. They really should just assign you a person who helps you do that. Good luck on tomorrow's tests!
Hey, has anyone heard from SunnyBear lately?
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MGJ - I have white baby fuzz on my head, 3 eyebrow lashes, and 2 eyelashes. Then we must consider the oh so wonderful nose hair I never thought of...drip, drip, drip. Gotta be at our best to finish the chemo infusion. 46 is a little more dramatic than I anticipated.
Sometimes I get so scared I won’t get past this. My mom is all tucked in and sleeping in my bed (DH away). The nightmares are getting weirder. This afternoon’s nap featured a 10ft turkey squashing everything in sight.
Seriously now I’m scared of 10ft turkey’s!
Hope everyone sleeps well without any extreme poultry challenges.
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Mammo: Nothing new showed up, and my tumor had a great response that even I could eyeball (I asked to peek at it). From a dense 'walnut in the shell' to a few wisps. No idea if wisps are scar tissue or live C, but tumor definitely looked substantially defeated.
Then they sat me down to wait, while imaging center's Dr reviewed my mammo, before leaving. Then they said they wanted to do an ultrasound. So I went in for ultrasound and they looked at my breast that way from all angles I could not see anything. I asked the tech 'why the Ultrasound?,' and they said ultrasound sometimes picks up stuff not visible on Mammo. So I got the impression they were double checking the pretty-clean-looking mammo.
It's less clear to me what I am seeing on ultrasound but I could see the cllip easily. I asked, "do you see anything new that wasn't there last time?" and Mammo Ctr Dr said, "No," and later when I asked she said that my lymph nodes were smaller (which I know by palpitation). I had a 3 cm lymph node upon diagnosis and nothing was weirdly big that I could see. I could not tell what the color/blood flow stuff meant but there were colors happening.
MRI was was earlier today. I almost fell asleep in that bedlam!
I hope to hear from my surgeon soon... I am breathing through the suspense until she calls back. But I was very reassured not to see any white globs in my breast.!
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Kelly Anne, it is so scary to think of the dark possibilities. Even w a great exam I am still thinking the same way. W TNBC there is not a lot of wiggle room so you just have to think of next steps, in case.
If a bad outcome, there are many followups you can do. They have clinical trials all over. I have asked my surgeon if they remove any live cancer to have it tested to see if it has morphed, in case I need to act on it.
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santabarbarian, it sounds like good news but understand need to wait until full results. I’m continuing to keep everything crossed for you, and wishing for the best outcome possible. Hu
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Thanks Mactaz!
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Kelly-Anne—‘extreme poultry challenges!’ Hilarious! I have completely stopped dreaming. I don’t think I’ve had a dream in months. My nose has actually stopped dripping because it is so dry and ripped up inside.
Santabarbarian—That’s great news! I know it’s not finalized yet but so great that the walnut is gone and the nodes have become smaller. Yeah! All positive findings so far.
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Kelly-Anne - I have the constantly runny nose, too. Hate it. I hope the nightmares resolve for you but it's not surprising that you have them.
Santabarbarian - Those sound like good results. I hope you get confirmation soon so you can breathe a sigh of relief.
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santabarbarian good luck girl with your test results, I am four days from surgery and very nervous. Friday I started my new cocktail, 12 rounds of the herceptin and perjeta. We dropped the T & C and kept the HP. My oncologist says the targeted therepy is the most important, lets hope he is correct.
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So your OC is having you take both H and P, my OC said he wouldn’t know if he would add P until after he gets the pathology report back after surgery. I’m going to pose the question on the triple positive site and see what others are doing.
Is anyone here also getting Perjeta along with Herceptin after chemo?
I wish foryou the best luck with your surgery, I will be thinking of you. 🤗
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hey there girlies! Just caught up on all the posts about turkeys, tests and make pattern baldness! I love that everyone still has their sense of humour intact.
We have been getting ready for Christmas 🎄, it has been a LOT of fun. My daughter has broken her ankle playing indoor soccer so we’re trying to make sure she isn’t too bored; it’s like wrangling a steer, she’s so frustrated with the idea of “resting”.
Good luck this week with tests and surgeries, chemo and rads, all things cancer-y!
XO
Kim
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MACTAZ Let me know what you find out about the Herceptin and perjeta. My OC said, these are more critical for me to take than the Carboplatin (Paraplatin), Taxotere (docetaxel) were. My OC has been very good with me through all of this so far.
take care girl, I will write more later "at work right now".
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hi hughope1, what I’m finding is some people were offered option to add perjeta, some did add and some didn’t. The articles I found said the results of adding perjeta to Herceptin, while showing improvement, were not as significant as expected for early stage cancers...
“The findings suggest that the dual HER2 targeting strategy in early-stage adjuvant settings should be stratified by risk level, experts said while discussing the results at the 2017 ASCO Annual Meeting.”.
I think the jury is still out and it becomes a personal decision. I think my OC wants to wait to see if I have a PCR, if so I assume he will recommend continuing H only. He is adverse to adding therapies that might have SE that could do damage to you long term. I’m not excited about adding it as the SE are similar to Herceptin and it just seems like a double down on them. I’m already having issues with neuralgia but if I still have cancer cells reported in my pathology I will probably insist on it as it would help some with recurrence.
I have put a link below to one of the articles I found. I’m going to ask my OC again about it and his reasoning for waiting to see what he says.
Take care and I will be thinking of you this week, hope all goes well.
https://www.curetoday.com/articles/adjuvant-perjeta-benefits-some-patients-with-breast-cancer0 -
I am still waiting on my MRI results. I called the MRI lab and poked them to try to get them in today as the suspense is hard to take!
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I finally heard back on my MRI -- the results were very good!
There is no visible cancer per imaging. One lymph node that had been enormous (3 cm+) is still enlarged (though it is smaller by half)-- but the surgeon felt that could well be from scar tissue. Obviously I'll need pathology to know for sure... but I am really, really happy.
I am very lucky that my tumor responded so well to the chemo -- as nothing else exists for me besides chemo. One silver lining of TNBC is that because it is a high grade cancer, chemo response can be excellent.
Originally I had 4 swollen lymph nodes, with one of them huge. 3 went back to normal. With 4 originally I am right on the borderline between her taking a most of my lymph nodes, or only 4-5. I asked my surgeon if she can take 5 nodes, and then if there is any live cancer in pathology, go back for more...? She said ok to that. (I do not want to forfeit all those nodes if I do not have to.... as I have a good friend who has had rotten lymphedema for years, and I want to try to avoid that if I can.) I have to get whole breast and axillary radiation anyway, because it is TNBC.
I hope all of you still taking those last doses of chemo are hanging in there! Stay the course!! Finish strong!!
wanderweg -- wishing you a great result on Friday!
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hughope - Surgery is end of this week? I will be thinking about you and hoping it goes well!
santabarbarian - Fantastic news on the MRI! What a relief! I think you're wise to have th surgeon leave some lymph nodes if possible to lessen your lymphedema risk. When do your rads start?
I am walking (slowly) without a cane! I can't remember if I ever posted the outcome about the calcification in my ankle, but the surgeon confirmed that it was the culprit for my neuropathy after it got pressed into the tibial nerve during my reconstruction surgery. Just a fluke thing. But they had to remove a little of my tibia to remove it. I was on a walker for a week (talk about feeling old and decrepit!) and then a cane. I went back to work yesterday and I can tell my ankle is on the mend. Can't wait to get my stitches out.
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Santabarbarian great news, I’m so happy for you. I also think you are smart to do fewer lymph nodes to avoid lymphedema
Wanderweg, sorry you are having problems but glad is wasn’t permanently damaged from chemo. Hopefully you will have a fast recovery from your surgery.
I’m heading in for my bloodwork today for my final chemo on Thursday. I don’t foresee any issues so while I hate the thought of another 2 1/2 weeks of feeling crappy I’m so damn excited about being done with chemo.
I will have to continue Herceptin for 11 more cycles, possible perjeta but I’m hoping my Path results are good enough I won’t need P. Won’t get those until after surgery in late January. I think most have tolerated H only so not as worried about that.
Take care all, we are all fabulous and bald .... hopefully we will start to see some of those little fuzzy things start popping out on our heads.
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I just found out my last chemo will be Dec 27. I was supposed to do 4 A/C then 4 Taxol. Did one Taxol and reacted badly on the second one. New plan is to go back to A/C for 2 more, then done chemo and onto radiation. I am nervous to only do A/C as originally they explained they do both A/C and Taxol because Taxol will go in and kill any cancer that was resistant to A/C. But....I suppose not dying from Taxol is a good alternative.
I too, am looking forward to getting my hair back and resuming my pre cancer life. I feel the shortening from 4 more treatments to only 2 more has lifted my spirits and is bringing in the hope of moving on from this nightmare.
Also, some bad news from Canada re new breast screening recommendations. I am so shocked, outraged and terrified!!!!! Have a read.
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MACTAZ I will print the link you sent me and talk to my OC next chemo with him. I am a nervous wreck about surgery Thur. just can't seem to get me nerves under control. I have not had any trouble since chemo of Friday with the H & P, first couple days my bowels were a little tore up, but nothing like the prior TCHP. I am able to eat, no bad taste, really feel pretty normal and now my bowels have correct the issues on their own. I did not take anything to help them along. No imodium.
santabarbarian Good luck with your surgery, I will be logging in to check on you.
Wanderweg I am glad you are doing better after surgery, don't push yourself to much we have all been through alot in our little group here. But I am thankful we have all had each other, I don't think we could of ask for a better group.
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Anyone who would like to chime in that has had Mastectomy already, please do so. I have tried to keep myself calm and keep telling myself how far they have come with this procedure over the years, but still a nervous wreck. I would like any feedback that you can share or hit me up privately.
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hughope, I'd feel scared too and I am sorry you have to face this. I know many people who have had mastectomies and have done well. I will be thinking of you on Friday and hoping the surgery is smooth and that you get a great result.
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hughope—my mastectomy with axillary node dissection was NOTHING compared to chemo. Not even in the same boat. I had 9 nodes out and 3 had tumor. My arm wasn't happy due to the nodes coming out and that was the most annoying part. My brain is shot so I'm not sure if you need any nodes out. If it just a mastectomy, easy stuff. I had 2 drains —one was out in about a week. The other one was in longer, maybe 2-3 weeks. (Like I said I'm brain dead and I had drains before my mastectomy so I could be wrong).
Santabarbarian—awesome news! I'm so glad you had such great results from chemo! What a relief!
I had a new MO meeting yesterday, a very short encounter as my current awful oncologists office didn't send my records and they had 2 weeks and they still didn't sent them. I had signed 2 different releases! So an hour round trip just for the hell of it. I just bawled all the way home. My mom was furious. Being quite aware of how awful my onc is I never cancelled my chemo appt for yesterday. I just came from the missed onc appt and went to chemo when I hit town. I was a mess tears and snot everywhere. I was not packing Ativan as I wanted to be clear for the meeting with the new onc. My dumb ass. . .
I'm going to now rant—I told the front desk I wasn't seeing any provider today so just take my finger stick and send me to chemo. No nurse practitioner for me. I had to wait and wait for 40 minutes I kept telling the med assistant that I'm not seeing the NP so don't send her in. The NP came in and tried to hug me. I was a board, stiff. That's not like me at all. I just told her I'm not talking to you or anybody else so let's go to chemo. She checked my labs and I was off. I had another huge panic attack. The nurse wouldn't give me Ativan as it wasn't on my profile and she wouldn't go ask the NP for it. I sat on the toilet in the bathroom and sobbed and sobbed. I came out and couldn't see I was crying so hard. I actually freaked out the people around me. No joke a lady got up and left her husband getting chemo. I was like a caged animal I almost ripped out the Huber needle mid infusion. I also started barfing but the Aloxi paralyzed my stomach so I was throwing up but my stomach wasn't contracting. It was so strange. I was a mess, a full on panicked, disorderly conduct, psychopath. As a nurse myself I would medicate people for their comfort as much as mine, at times. I couldn't believe this nurse let me torture those around me. I now feel awful for the people who had to see that mess.
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MGJ I would be so livid if I was you. What BS!! I cannot believe the delay in sending records. I have faced some of this rigamarole and it is so demoralizing! Now i get every report sent to me so I can send them myself. You want to feel your team is a well oiled machine taking care of everything, and not forcing you into an oversight role but.... no such luck, sadly, for any of us... We have to be in an oversight role from the floor puddle we are laying in, and it's F'n exhausting.
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Santabarbarian—I just went to chemo yesterday to check another one off the list and to push to get my records forwarded. Which they did after I lit them up upon my arrival
A couple people I know have expressed concern that I’m switching oncologists when I’m almost done with chemo. But for me what is glaringly important is my aftercare. I’m so freaked out about a recurrence that I want to be really confident in my oncologists care. I don’t trust my current onc, and I’m going to need meds for years so I’m going to need to trust somebody eventually.
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It is imperative to feel respected and esteemed by one's medical team.
I have grown to really trust my oncologist and I believe he cares about me. I did quite a few complimentary practices alongside the chemo and I was honest about it with him. I feel he had some raised eyebrows over a few things and a slightly rocky start over that, but he was also impressed at my research, noticed how well I withstood chemo, how strong I stayed. It's definitely extra work for him, like when I had elevated liver enzymes, to look up all the many supplements I was on, for example. Yet he also really wants his patients to do well, and there I was doing well-- so he supported me, and our relationship got better over time. Also, I felt he would push back, if I were to ask about something that would be stupid. What I chose to do all has validated studies suggesting benefits. But 'grey area' for him; not having been through a double blind clinical study.
MGJ You deserve a teammate and ally, not an oppositional force! The first line chemos are mostly pretty standardized... but the follow up care is critical, and if/when multiple options exist, dosages, protocols, side effects, etc-- you need to trust the advice you are getting as both smart medically and also really respecting YOU and your wishes.
Sending well-wishes & rest-wishes to everyone!
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MGJ, i can't believe the crap you have had to deal with, I just can't imagine going through everything you have had to deal with on top of having BC. I don't think I would have reacted any differently, In fact, I probably would have been screaming at the top of my lungs. My heart goes out to you - we are here for you.
Hughope1, I saw my OC today and guess what - he is putting me on H and P. When I asked him why, he said that HP does provide better protection for high risk cases, i.e., residual disease, multi-focal (which I have), and large tumors. Since I won't have surgery until end of January and path results won't be available until early Feb, he doesn't want to take a chance in not providing the best protection. This seems to correspond to what you OC said. I think, but not sure, if my path results come back PCR, he might pull me off of P but not sure, sometimes he does reverse his decisions. So I guess I will just wait and see what happens.
I will be thinking of you, I believe your surgery might be the 13th, which is the day of my last infusion. I will be thinking of you. I'm nervous now about my surgery and as time gets closer I get a little more freaked. For me personally, I think I'm more concerned about the physical loss versus the surgery - I must be vain.
I'm sure that will change as the time grows closer.Today, I also had a surprise MRI with dye. The last couple of weeks I have been having some dizzy spells and weird vision (flashing lightning bolts). The thing is it didn't seem to be vision related because no matter what eye I had closed It was present and I even saw it with both eyes closed. OC said it could be nerve related or something with my brain but not related to the eye. The only way to isolate cause was to make sure there was nothing going on with my brain. Well, the MRI specialist gave me good news, I do have a brain.
I will get the results on Thursday, but I'm fairly confident is is all related to Chemo and affecting my nerves - I have some nephropathy now.Hugs to all, stay strong. HUGHOPE1 - stay strong - you can do this. I will be thinking about you and sending you all my best wishes.
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