TRIPLE POSITIVE GROUP
Comments
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Happy for you Liz.
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Kelloggs,
I usually got Herceptin on Mondays but when my lumpecomy was scheduled for Tuesday the MO postponed my Herceptin to the following Friday....4 days.0 -
Lago
Chachamom
Thnaks a lot.
Yes, both the original and this second-opinion pathology review is for the tissue obtained from biopsy because that tumor cannot be located during surgery. This is why I am not confident about the result. Never heard of an IHC 3+ changed to FISH negative.
The missing tumor makes my case quite complicated.
I have two tumors found by biopsy.
The tumor behind nipple: HER2 negative (IHC score 2+，FISH negative) ；
The tumor at 12 o ’clock: HER2 positive (IHC score 3+)。
Only one tumor was found by surgery
The tumor behind nipple (1.5cm): HER2 negative (IHC score 2+，FISH negative) ；
My oncologist ordered oncotype test on the tumor behind nipple and the score is 20. He said he recommended TCH*6 although he also ordered the second-opinion pathology review on that 12 o’clock tumor sample obtained during biopsy. Anyway, now he changed my regimen to TC*4. Oh, my endless worries
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Thanks Ashla - I could do that. I get infusions on Thursday so maybe she will be alright with postponing until Monday. Thanks for the response!
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Hello,
Was woundering how anyone felt when they finished their last her herceptin tx..I finished mine today and excited and scared to death all in one ..like waiting for the other shoe to drop off..any advice..thank you0 -
sherry...I went through the same emotions day after I finished Herceptin.....I was thinking now what..no more treatments i'm all by myself with this monster.......
It passes give yourself some time and it's OK to feel this way...all these months you felt protected..
I'm sending you big hugs and love from NY ♥
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Sherry I was so excited to finish Herceptin. Remember you're hair will start growing faster. I also noticed I was a bit less stiff. Also won't you be taking an AI or Tamox? Finally Herceptin can have heart issues. While it might not happen to some of us that have only been taking it for a year I do wonder about long term use.
This is a day to celebrate not fear! Time to move on with Life!
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Thanks to everyone who responded,and yes I'm taking tamoxifen have been for 6 to 7 months..this site is great everyone is so supportive of others which means a lot especially when you have no one to talk to...once again thank you all
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Hi everyone! I guessed i missed this forum all the while. I will digest each post momentarily. Mine is also Stage2B,sherry67. Im looking at all the number of nodes removed from y`all. I'm just thinking if it is really necessary to remove all the nodes.
Mine was a special case, the tumour board has decided not to remove all my nodes due to a vascular augmentation done to my breast tram flap. Instead, they will just do radiation therapy. I will be just starting my chemo next week. ANxious about the treatment.
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Thank you so much, kayb.
Every word you said is just so true. I truly want to start chemo without those uncertianties. I will feel more comfortalbe if I know I have done everything I can even though there are always sth I cannot control.
Thank you for your encouraging words. I will talk to my doctor next week.
Good luck.
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rozem...I started effexor about 4 months ago to help the hot flashes. It was wonderful for two and a half months, just had warm flashes and fewer. I usually have two-three an hour. Now, I am back to having the really horrible drippy ones.
Saw my onc for three month followup. He gave me a script to up the dosage on Effexor. Not sure I want to, but I might try it for a couple months for the summer if it will help.
Still working on him to do some testing for tracking purposes. My new plan is to tell him that I got mammograms to watch for problems. It found the problem early and was addressed. Seems stupid to now say ok, we will wait for symptoms. I think it should be addressed just like routine bloodwork for cholesterol levels or blood pressure. I will win this battle. And I plan to have him see the light too, for everyone else.
I am at Wake Forest going for my third vaccine tomorrow., so I am just eating junk food and loafing in the hotel room.0 -
Hello PixieNel! Glad you found the forum. I have the same dx as you, about 14 mo ahead. I actually refused to have more lymph nodes removed. I had neoadjuctive chemo and that sometimes results in 'skip phenomenon' d/t scar down. I skipped the SNB for this reason. I am not sure if they could do the SNB's before chemo to avoid this. Have to ask this. Just this year, the reccomendation is changing to not remove all those lymph nodes. The outcome is not significantly different and the risk of LE was too much for me.
Good luck with the chemo next week! Wishing you the best and we are here for you!
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I also refused the ALND (node dissection) based on the new research and opted for axilla rads instead as they have a lower risk of lymphedema.
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Thanks moni731
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My SNB showed that the first of the two nodes taken was positive. Even though I had a MX, I will have radiation and not an ALND. My surgeon expected some controversary among the docs, as this method is fairly new. He feels there is tons of data to support it, though. His opinion is that the radiation shows great benefits, while the ALND is full of problems. My SNB scar and recovery was a piece of cake and so far, no signs of swelling and I've had little pain in the area. I have yet to meet with my RO, so things may change.
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moni - what is 'skip phemomenon'? Never heard of it.0
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Vball! Good for your Doc!!
I made this exact decision in 2010 when the studies were just starting to leak out...I had to fight tooth and nail to get them to leave my axilla alone. Then a year later, barring obvious gross disease, it became fairly standard practice to leave the axilla and radiate. 4 of my nodes were positive, out of 4 taken. Your Doc is right...there is lots of data on this out now, just in the last 24 months or so.
But occasionally I run into an odd ball Onc, who does not keep up on the latest studies and recommends I STILL get my axilla removed. Even after chemo. Even after rads. CRAZY!
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Dancetrance- Skip phenomenon is something that occurs during the SNB d/t the dye not being able to penetrate the scar tissue caused by the chemo. The sentinel node is not clear d/t to this non-uptake. However, other nodes may uptake the dye, causing more nodes to be removed unnecessarily and the sentinel node to be overlooked causing more false negative results. My BS was okay with my decision to only remove the 'positive node on ultrasound', as he was familiar with the new studies, but he did try to talk me into a dissection. In my case the positive node was assumed to be the sentinel node. On ultrasound and mammo this Feb, I have yet another enlarged node in the same area. Will biopsy in Aug. if it's still there (it is, I can feel it).
Kayb- I wish I had had that available. Probably wouldn't had been able to do it though, in hindsight, as I am allergic to m. blue! Go figure. But the choice would have been nice.
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Looks like I will have to make up the one skipped Taxol infusion tomorrow. I was sort of hoping I was finished. Oh well I can celebrate tomorrow for sure. Thank G-d!
Peggy
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PeggyBeen reading the Breaking News in BCO about the new drug , Perjeta. It was found to have minimal risk of Heart Dse as compared to Herceptin.
Hope there's a clinical trial for that drug at my end.
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Moni - thank you for explaining skip phenomena - really interesting! So why does chemo cause scar tissue? Is it scar tissue in the breast or lymph node that had cancer that the chemo scars somehow?0
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dancetrancer- chemo causes cellular death. As with any living tissue that has died, it is replaced with fibrous (scar) tissue. Scar tissue is less pervious/active than regular cells, hence the issue with uptake. If you have ever re-injured a scarred area, you will notice that that area heals more slowly than other areas. This is no different than cancer tissue. If you think of cancer as a super cell with potential for unremitted growth and repair, scar tissue is pretty much the opposite. Replication and repair are not as active; less blood flow, etc. Yes, cancer cells that are anywhere that die are replaced with scar tissue. Usually, the body will dispose of these cells, but with a tumor it would take a while, and the death may not be complete, hence the need for surgery after chemo, ie margins, re-excision etc., with neoadjuctive therapy. Unfortunately, complete pathological response cannot the determined without tissue exam, and every cancer cell may not respond to the chemo d/t this rapid replication. Maybe some day, but not in my lifetime. Hope this helps.
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moni - thank you for the explanation. It helps a lot! I fully understand scar tissue (I'm a physical therapist - I better! LOL), however, I didn't understand how chemo caused it, and where...I was thinking, if chemo goes throughout your whole body, you know, why wouldn't it cause scar tissue everywhere in your body? That was my question. I see the connection now. It is going to cause scar tissue where the cancer cells were, if doing neoadjuvant chemo. And thus, if that is in the breast, and they try to do sentinel node mapping, the blood flow to the lymph node may be disrupted/altered by the scar tissue, making the mapping ineffective. Since I only had adjuvant chemo, I never had to learn about this. Thanks for the education!0
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dancetrancer- No problem. Only where there is an insult (injury) to a substantial number of cells (ie tumor, infection, skin) would the scar down be obvious. Cellular death, without tumor formation, are digested by macrophages rather quickly and eliminated. Adjuvant therapy does the same thing, only to individual cells (hopefully).
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Ladies, you've been busy. Glad to hear things are going pretty well here. Really glad to hear my zits are not uncommon. I knew they HAD to be linked to the chemo; haven't broke out like this in YEARS!!
I will be picking up my OncoType and HER2 path reports at the end of the week. I have the path reports from both surgeries, but need to add those to my pile. Plus, like someone else mentioned somewhere here on BCO, with the Masters Degree I now have in BC, I should be able to read the thing like the comic strips.
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kayb-That is good news! Yes, the tumor scarred down. Hopefully the SNB was not impaired, as I see they also took some nodes. These, had they been positive, would also have had scar tissue (hopefully) to signify that they did have cancer. No cancer, no scarring= Yeah! I am also in your boat with the high risk thing, but opted for lump as at least one node +.0
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Hi all - wow, you have been busy...I will just add to the current topic by saying I had a SNB as the first thing (none of which were palpable or questionable on MRI) and had 1/4 nodes positive. Having neoadjuvant chemo - so do you think they will take any more nodes at my BMX??? Haven't had my pre-op appt w/my BS yet.
Well, the fever is back! I hadn't even taken it the last day or so since the weekend but I was feeling rather flushed tonight (in addition to pain from my 3 Neupagen shots). It crept up to 100 on my good old fashioned thermometer so I decided my MO would rather be called now (at 8 pm) rather than midnight. She told me to go ahead and start on the antibiotics I have here and keep an eye on it.
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kit...I ran a fever the first two times I had taxol/herceptin. Called my onc around 9 p.m. He told me to also take two tylenol and Benadryl. I assume it worked as I passed out shortly thereafter and when I woke up in the morning, it was normal. LOL
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LOL...I had already taken a Percocet for my (@*$@$*)@$( Neupagen shot pains but she said to go ahead and alternate that with tylenol if it wasn't coming down. Luckily I just so happened to have the Doxycyclin from my infected SNB site/seroma issue before I started chemo. I have an entire pharmacy in my desk drawer.
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Yep, me too. I think the Benadryl is supposed to help with Taxol/Taxotere side effects.
My husband says we could make a fortune on the streets. I fill every prescription even if I don't use it. You never know when you might need something.
I can only take 1/4-1/2 of Ambien in order to still function the next day, so I think I can go about three years with that.
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