TRIPLE POSITIVE GROUP
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Jackboo, you did the best you could, with the info you had.
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Hi all! No, I had to stop the chemo. Only got 1 dose of AC and 1.5 doses of TCH, twelve of Herceptin before the MO said no more. We also tried Abraxane, not sure of that number, pretty out of it. Most everything else happened after the chemo attempt was done. The last 4 Herceptin doses were done in the hospital in a procedure called rapid-desensitization, to no avail. I hope that was enough. I am kind of leary telling people all of this as it would scare the beejeezes out of me. I have to emphasize that THIS IS NOT THE NORM. My MO said she only had one other case in 25 yrs of practice that this happened with and not nearly to my extreme. My immunologist brought my case before a convention board and no one else there had had this much trouble. My MO said I should consider a Mastectomy, but I cannot even be considered for reconstruction for being allergic to everything. I've lost enough at this point, not going there.
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Thank you Moonflower. This breast has changed a lot in size and shape since all the treatment. Will go to the clinic and get checked. So tired of this disease reducing me to this state at regular intervals.
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Jackboo - Deep breath. Scars are funny things, and tend to change a lot. Being observant is all we can do. Let us know. Thoughts with you...
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Moni, thank you. There is nothing I can do now. Will go to the clinic and see what they say. I can't thank everyone enough for the support. Will report back when I know.
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I agree Jackboo: DEEP breath! Try to get a few hours sleep and then see the onc tomorrow. Do keep us posted!
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MonI, I so sorry you had to go through that. That was awful. I am allergic to many antibiotics, so they think hard before giving me any, but allergic to chemo must have been a shock. This Damn disease just plain sucks, and so do some of the treatments.
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Thank you Arlene. Maybe some Benadryl will help. Thumping stress headache now. I hope to be in the position of feeling silly tomorrow if I'm given the all clear.
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Hi jackboo,
I hope it's nothing :-)
One thing that helps me with the stress is to point out to myself that I'm not dying today and I'm not dying tomorrow. That seems to keep me pretty calm. Sometimes a good cry helps too of course...
Regards Jenn0 -
Jackboo - I had a BMX and just had a small nodule evaluated last week (benign, thankfully) AND the doc found another nodule that I missed that now needs further follow-up. So a BMX is not fool proof for not having post-tx scares - don't beat yourself up. I know how scary this is - hugs to you - hoping you can get it checked out ASAP so you don't make yourself sick with worry. My mantra I say to myself is "worrying isn't going to change the outcome". That helps me refocus.
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jackboo - If you have been working out the area could be a little swollen and that might make the scar seem indented.0
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Thanks Jenn and dance tracer. Have got up again having failed to go to sleep. My mind keeps going to what ifs. If its a new lump I presume that's a local reoccurrence. I'm just 2 months post Herceptin and had just booked a reduction surgery for the other breast.
I think there are women who have had a local reoccurrence and gone on to do well.
As you can see I tend to veer towards pessimism!0 -
Omaz, it could be. It's just that I've been there with breast pain and indents the first time round.
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Jackboo - I hate this stinking disease.0
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Omaz, me too! We have all been through so much. It's so random how the treatment works for some ladies and not others.
My mammo was only March. It did mention residual scar tissue. It's just the slight indentation that worries me. I could cry.0 -
jackboo - my lumpectomy scar has become slightly indented with time as the scar tissue kindof contracts. I saw my mammo images from April and could see there is an area of scar tissue where the lump was.0
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Omaz, that helps thank you. I keep thinking that it will be scar tissue changes. Sol, thanks to you. I will post straight away when I know. Going to be exhausted. It's now almost 5am. This disease really is cruel in everyway.
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Forgot to mention, on my birthday, last Wed, I was examined by my BS as part of my plans for reduction surgery on the other breast. I had to stand facing him and he marked me up with a pen. He didn't see anything then but it wasn't the same as having a full, Breast examination. My last one of those was July and no lumps were found then.
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Soltantio- I am not sure of the year, only that I was several years old. Sometime mid 60's. He did have thyroid cancer first, then leukemia that killed him. The breast cancer was found post-mortem (he wanted the autopsy for his siblings). He had no children, on purpose, as he was so afraid to pass anything on. Sad.
Just spoke with my mom, he died at 52 in 1965. Developed leukemia in 1962. He was 31 at exposure and was drafted just out of college in 1940 as some of the first draftees.
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Jackboo: (((hugs))) and blessings....breathe deeply and know you have the support of an army here!
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Chachamom, thank you. I have had 2 hours sleep. I plan to go to my clinic as it opens and then come home and sleep, hopefully worry free.
My kids don't deserve this.0 -
Just got back from clinic. Ultrasound booked for Thur 9am. Doc thought it felt like hardened scar tissue, but only a diagnostic scan can rule it out. Im a bit calmer but boy has this fear gripped me. Diarrhea this morn, so tired after 3 hours sleep. Thank you all for being there.
Liz
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Glad to hear it is "all in hand". Now you just have to put it in a box at the back of your mind until Thursday!
🎁 Jenn0 -
Moni 35% is still a huge reduction compared to not being treated at all. You need to look at it as 75% chance it won't return. Odds are on your side… also remember there is a percentage (40% in my case) that you didn't need chemo at all. You did most of the Herceptin… and they still don't know if only 1/2 that amount is enough.
jackboo there was so much going on at the beginning and we didn't fully understand our disease. The doctors wouldn't have offered you a lumpectomy if it weren't right for you. If you were to have a local recurrence then they would remove it but you can't assume you will. In these cases you have the same survival chances as if you did the MX from the start. Let us know what your BS says. Like dance says BMX isn't fool proof. They are always checking our scars 2X a year the first 5 years too.
BTW my scar on righty is indented but not on lefty.
soltantio once the nails start there is not much you can do. Mine actually got worse after chemo. You should avoid all trauma though. I did lose several toenails and they grew back just fine. I really got the nail thing badly. Some are still lifted (and probably will never get better) and still a little yellowish… but the Urea treatment is helping a lot especially with flattening them out.
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soltantio...I lose toenails from running a lot. They can go over the nail bed with a gel so I dont always have Franken-feet.
It looks good as new, and protects the bed while the nail grows out. Easy peasy.
Jackboo..my heart leapt when I saw you had the big d....you have stressed yourself into a knot. Hugs my dear. I am sure everything is fine. I have lumps and bumps pop up all the time from my fatgrafting. One is about 2 cm right now. Still freaks me out even though I know what it is!!0 -
Do you twitter? I'm trying to see if there's any point to it or me. So far i am using it for incoming info mostly medical.....i only have 2 followers and one is Livestrong and they follow everyone! Not loving it tho.
I discovered this site however which you all probably know about already. Can't link on my IPAD but it's called Cancer and Careers. Looks good.
I hear ya Jackboo..we all do loud and clear. Great you come to the forum when you are troubled.There's lots of love and help here. Dance...and probably me...not so much....we're all different. i'm working on it. You dance? Great to vent....0 -
I gave up on twitter in 2010. I'm still on facebook though. Livestrong is also on facebook.
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Lago...
I thought it was me . Don't really see the need with all our other communication sources. Too much info to sort through. And going fwd , the word limit would drive me nuts. I see it as a marketing tool. The Kardashian trailer park brigade is tweeting it all the way to the bank!0 -
Jack...I am so sorry you are going through this....and even more so that I wasn't on-line when you needed support!
Just so you know. My cousin had a lumpectomy (I know you guys are probably tired of hearing about her, but she's just that kind of awesome!). Anyway, she ALSO has a "dent" Jack. So maybe it really is scar tissue re-working itself. I'm praying it is nothing.
Thanks Lago. My mind lately, whew. So distracted. My PS told me 2-3 months with the band, so the new pocket could form and be strong before I did upper body workouts. He said all my normal pec work is fine after that because the scar tissue keeps the implant where it is supposed to be. This band is killing my natural side though....it does NOT like it...lol.
Though in all honesty, I just do the pec work to keep my body balanced now....a person can get lots of muscle pain and other back problems when they work just the lats (back) and not the pecs. But there really isn't a reason for me to lift as heavy as I can on pecs anymore, because the muscle is OVER the implant. There will be no pec definition for me ever again. So I find pushups meet my pec needs, sometimes a little weighted push-ups....keeps the muscles balanced.
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I was told no push ups but our PSs might have done things differently. I know I don't have any alloderm. I found the band itchy so I wore it over a t shirt. I think I eventually went to nights only.
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