TRIPLE POSITIVE GROUP
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Been a while since I've been on here. Let me fill everyone in on my status. Did my 1st tx of TCH on 12/8. Did the H on 12/15 & 12/22. No probs. Not many side effects except for dry skin, dry mouth, & fatigue. Then came my 2nd tx of TCH on 12/29. Not so good. Had an allergic reaction to the taxotere. They had to stop it. Only got the H that day. Onc switch me to dose dense AC w/ the nulasta (??) shot. The shot makes me feel like absolute crap. More tired. Don't like it. Don't like feeling this way. WBC is always low so can't go any where. Only go to work. Small office only a few people work here. 2 tx in and when I see the NP she's trying to tell me 2 more tx and then 3 mths of taxol. Can't do it. Won't do it. No reson for it. Never spread. Can't take this!!! Now today my hips start hurting for no reason. I'm only 37 and feel like 110.
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neetah - sorry you are feeling so bad, I know all about feeling like you are 110 - I am exactly half that age! Can they continue your Herceptin without any more chemo? That and hormonals may be enough to safeguard you.
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I think the my plan is to suck up this 3rd tx and when I see the onc on the 10th telling him that I'm done. I can't do any more of the chemo. It just makes me feel worse. And after this 3rd tx of AC its actually been 4 chemo tx. Don't see why they can't count the 1st one.
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neetah - I'm surprised they switched your regimen after your reaction. I am also on TCH and had an allergic reaction at my second treatment. I had chest pain and tightness, shortness of breath, flushing and felt like my lower back was in a vice grip. They stopped my infusion, gave me extra Benadryl and Ativan IV and then restarted. I finished tx fine and had my 3rd tx on the 19th of this month with no reaction. I've heard that AC has tougher side effects. As far as the Neulasta shot goes, the first one is the worst because of the initial expansion of the bone marrow. Subsequent shots shouldn't be as bad. Take Claritin (regular 24 hour kind) the day of your shot and for several days after. It helps with the bone pain tremendously.
Please talk to your MO before you give up...and of course you can always come here to vent and get some hugs that are needed. Hang in there!
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I'm sorry it's effecting you so badly. It's a little late now, but did you try taking Claritin for several days before and after the nuelasta? Some people swear it keeps the worst of the se's away. Everyone has to make their own decisions, but 37 is so young. You have a lot of time to live. I hate to see you not get all the recommended txs. ((((hugs))))
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Neetah I know a gal who did exactly like Kelloggs. Got a bad reation (not sure if it was T or H) they gave her benadryl and she finished all 6 tx. (Actually the only other SE she had after that was some taste change after TX 6. I told her I hated her a little be for that
) But your situation may be different. Her white counts were fine. Also due note the first Nuelasta is usually the worst. OMG I couldn't stand up straight for 2 days after my 1st Nuelasta. The other 5 weren't as bad but I did take some Advil (onc permission of course).
AC can be tough but it's only 4. Most say taxol is much easier but I can't say with any experience. I wish I could have stopped after my 4th tx. Taxotere sucked. Made me stiff too but it did go away. Herceptin will make you a little stiff too but not like Taxotore.
hang in there this stuff does suck but it's not forever. They want to hit it hard. Yes you are 37… you have a lot of future living to do.
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I have been doing the claritan and motrin. They told me about it at the 1st shot and started taking it. Don't think the Onc is going to like me when he sees me. But I have to make my own decision. All I know if it hasn't never spread to the lymph nodes and they had a clear margin when they removed the tumor. This pain in my hips just started today. Never had this before. Shot was last Friday.
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report all symptoms to your onc. I used to write them down. I had no nodes, no LVI and clear margins too. Like you my gut says it hasn't spread but with the size of our tumors and the HER2+ I wasn't going to take any chances. Your onc should have given you the stats for mets based on your pathology. HER2+ doesn't need nodes or LVI to get mets. The odd are in our favor not having LVI or node invasion but not even close to a guarantee. That's why they treat us. Oncs don't prescribe chemo lightly. It is unpleasant and full of risk but in our case the risk and unpleasantness out weights the risk of mets.
Be sure to get the number from your onc if s/he hasn't discussed them with you. You should have received a print out from adjuvent online… and that doesn't even show the HER2+/herceptin stats.
But yes ultimately it is your choice. Just make sure you have the correct info. The scans can only see mets once they reach a certain size. Small microscopic mets can't be picked up on the scans. I don't remember what size the cancer has to be before they get picked up. I would discuss this as well with your onc. ♥
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Tonlee...iemailed wake forest this afternoon. Where in Ohio are you? I am in Indianapolis and would be willing to share a room and even a ride down there if you would have to come my way.
The pennsylvania site would be closer, but I am waiting to hear if they are taking any participants.0 -
Fluff, I'm just outside Dayton, Ohio...not even two hours from you. So you'd be coming this way I think...
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Fluff, where is the Pennsylvania location? I must be looking at the wrong thing because the closest to NJ I saw was DC.
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Well, I guess that is true. As soon as I hear anything we can get together and set it up. I'm guessing it would be Monday for me. In a worse case scenario, we can find a joint place and meet and then drive together.
I would really like it if the pennsylvania site would work.
Although Greece would be nice.lol. Or San antonio if flights were cheaper.0 -
Fluff,
Right now I'm undecided, it is a huge time commitment.
We have to go all the way there for the first blood draw. They won't have the results for 72 hours, so home we go. Then when the results come in, they call us back and tell us to come back for 5 days for the DTH and 1st vaccine.
After that, we must return for 3 days every month (or every 3 weeks) for 7 trips.
Once that is over we must return for the boosters at 12, 18, 24 and 30 months for 3 days each.
That's a whole lot of time for me to be away from my kids. My husband's job keeps him traveling a lot.
We're going to discuss it this weekend. But right now I can't see a way to swing it with the kiddos. I'm also hoping that the Phase 3 trial will be more expansive, not just in location of trials but also to include any woman who was treated with Herceptin....
I didn't see a Penn. site. Where is it?
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Question to those of you with implants--anyone discovered lumps ? MO thinks its just scar tissue, but I have an ultrasound on Monday and am FREAKING OUT! Isn't this the reason I had BMX? I am still on herceptin and its 'highly unlikely' that this is BC again, but WTF?
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Thanks for the welcome. Congrats to Spec K and prjkug. Good to know there is something to look forward to. Ashla, re the port, if you have a bmx, they don't do blood draws on either ARM, and leaving it in makes life simpler, if there are no problems with it. some keep it for years. I have a pacemaker on my left side so it will look like a matched pair. (At least I have a pair of something) LOL! You also asked why a BMX - well, i had a DCIS Dx in the rt breast. There was a very small spot if DCIS on the lt. My mom and two of her sisters died fcrom BC and I wanted to do a BMX for peace of mind. Good thing I did, they found inv asive tumor of 1.6 cm in the surgical biopsy of the L breast. So i was glad I made that choice. I should mention. That my mom had the same thing happen to her, found the invasive on the other side. Guess that made it easier for me to make that decision.
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It is the winber medical center in windber pa. I just mapped it though and it is only one hour less, so I would rather go south!
I have the freedom to go, but you are right...it is a big commitment and would be tough with kids. I am not sure I could start until after I am done with herceptin at the end of March.0 -
Moonflwr....I had bmx and they have done iv sedation hook ups as well as blood draw on my non lymph node surgery site. For sedation, the port is in my upper chest and in the way of the reconstruction surgery. They were all very careful not to do anything on the lymph node side, but no Problems with the other side.
Wendy...i had a small lump at the edge of my surgical site. Freaked out right before the implants were put in. Ps said scar tissue, but I called the BS just to make sure. PS cLeaned it all up during implant surgery and made sure to tell me there was nothing there. I have a tiny bump on the scar line now that has me paranoid. BS once told me that when doing the self exams to watch for something that looks like a pimple. I am forcing myself to wait until I see the PS at my tatooing on feb 7 to say anything.
Shore...Pennsylvania site is Winberg Medical Center but they may not be taking anyone new.
Tonlee....totally understand. I could never have done this if I had little ones. Even now, I have a daughter who just graduated and is setting her life in LA. If I am accepted, i will be trying to figure out how to maintain my real etate career, do the study and squeeze in visits to her. Lol....that will bring in the stress factor.
I mapquested the distance between the PA and NC location and it is only one hour less for the PA site so warm weather sounds better!0 -
Wendy the most common place for local recurrence, if it's going to happen is the scar but don't assume that's the case. I know I felt a lump after my exchange. My onc felt it and said if my PS didn't know what it was (since he was just in there) then she wanted me to see my BS. I saw my PS that afternoon and he said it was just scar tissue. That was in June. Its all soft now.
Fluff you're getting your tatts on Feb 7th! Me too (this is my reschedule date). I get liver scan in the morning and inked in the afternoon. What a way to spend my birthday.
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SK that is hilarious !ha my 2nd to last H yesterday! Man was it the worst, I have been traveling for the last 4 weeks, like not at home at all and I went off the glutamine and coq10. 10 muns after they started H I had uncontrollable muscle spasms and they stopped the TX. But was it a long night! it felt
Like The OTHER Chemo. Muscle cramping and vomiting. Finally I had to take Xanax! Better today though but the supplements help!0 -
Hi ladies. I'm heading into my month of canserversaries.
Two years ago today I found my lump while getting dressed for work. I remember just 'knowing' it was bad and immediately calling my obgyn for an appt. Waiting 3 days for that appt was horrible.
For some reason I'm more affected by all of this than I was last year.
Also - to wendy - wanted to say that while I had lumpectomy and not implants, I do have lumpiness at my incision site 2 years later - and my onc and bs say it's nothing - just scar tissue. I've had a few mammograms and MRI's and all are benign.
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Saral mom, glad to hear all is NED for you! I have been going through one cancerversary after another. A mammi that saw clustered microcalcs was right before thanksgiving. The biopsy by a general surgeon identified lcis and I was told to se an onc to get tamoxifen.
Then my NP friend made me talk to other breast specialists. An mri in late December identified a suspicious spot. Ultrasou d biopsy a week later was pronounced clear...oops no, they decided it was too clear...third biopsy on january 28 identified the tumor ans subsequent pathology.
Bmx was 2/28 but there was nothing there...all clear, so I guess I should go with the January date.0 -
nmoss - why do they think that happened with something you have been receiving for so long? Maybe take some Benadryl and a Xanax right after for your last one! I am so sorry that happened, and it had to be scary and reminiscent of chemo! Yikes! How is the DH doing in school? I am assuming that is where you were traveling.
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nmoss ...hugs. Ugh.
I am SO jealous about the vaccine trial. I would do it in a heartbeat if I was eligible. I finished herceptin a year ago so I fall out of the timeline parameters.
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I must have missed the information on the vaccine trial. Anyone have the link....guess I should just go back and find it.
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arlene - go back a page to fluffqueen's post it has the info and link. I tried posting it but it wouldn't work. You can go to www.clinicaltrials.gov, click on breast neoplasm in the alpha list, then find it that way too.0
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The trail link is http://clinicaltrials.gov/show/NCT00524277
I'm going to talk to my oncologist to see if I can participate. There is a location that is near; they're doing it in Tacoma and I live in Seattle. I'll let y'all know what I find out. Thanks for the info!!
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Fluff,
Looks like I'm out.
Discussed the vaccine with my husband this weekend. There is just no way I can take all that time away from the family, especially my 8 year old (who has at LEAST two hours of homework every night, which pisses me off!..,lol)
I hope you're able to do it
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Hi Sister,
Did a quick catch-up on some posts. I am thinking about vaccine for a while now but haven't take actions yet. Will think about it again.
Would like to give you an update about my abdomen mass. The US is clear and uterus etc seem fine, except for two faboroids that we already knew. Very relieved. but now I do not want to touch my belly anymore as some sisters suggested to do self-exam every month there. The hard mass is still there but we do not know what it is.
Talk about cancer and friends, after I was diagnosed, one of my friends told my other friends, or previous colleagues about it so I am not sure if the whole world knows I have BC. Now I saw there is a post for assistant professor in a university that I used to work, I want to apply but afraid I will not be considered if the people there know I have BC. I know there is stress for being an assistant professor so not sure if I should go for it or just forget about it. But I do need to search for a better job opportunity now. So I never told anybody I knew I have BC. If people know you have BC, you are out in the job market, isn't it? I would love to hear your thoughts about this issue.
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meglove apply for the job if you are interested. Remember you can turn it down if you decide you don't want it. Also, just because you have BC doesn't mean they will turn you down. For all you know the hiring manager is a survivor. Remember 1 out of 8 women. Also don't assume they will discriminate.0
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Excellent advice Lago.
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