A new triple negative friend
Comments
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Hi wink,
I just had my 3rd treatment of A/C today. I have one more to go! Then I will be doing 12 weekly taxols. I am also doing a trial with avastin during my treatments. I had surgery before chemo. I don't know about radiation yet, going to get a second opinion. Surgeon and onc dont think I need it but I'm not convinced. 3 positive nodes is way closer to 4 than 0. They say radiate if you have 4 or more positive nodes. we will see.
Teresa
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Thank you Teresa,
Do you know if the trial dictated the 12 weekly Taxols or would you have had that many anyway? I'm curious about so many Taxols. I had dose dense T but only 4 treatments (my onc mentioned 6 but only gave 4, wishing now I'd had the other two-call it a gut feeling).
How is the Avastin given? Same type of infusion, pill, shot?
Have to go get ready for work now. Thanks for the info. and have a wonderful day.
Wink
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No I could of done the taxol 4 x 3 weeks but the onc said that he believes weekly is better, less side effects usually and more effective. As for the Avastin I am given it during each treatment IV. When I start on Taxol I will receive it every 3 weeks so That will be 4 more times. On the last dose I will find out if I am truly getting the drug, which I'm pretty sure I am because of some of the side effects. They split the group into 3s...20% get saline, 40% the drug, 40% the drug....then at the end one of the groups that got the drug goes on for another 10 treatments every three weeks, so thats another 30 weeks of treatments. Part of me hopes I am in that group but then part thinks if I'm not then I can insist my doctor gives me carboplatin. Which is the better way? I have no clue.
Are you done with treatment? what treatment did you get?
Have fun at work!
Teresa
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Teresa,
Wow another Kansas girl. I haven't seen many of us on here.
If you want to PM me that would be great. You can also add me to MSN messenger as ocinny414. I'd love to talk to you and help any way I can.
I'm going to the cancer center in Topeka, they are awsome. My oncologist in in constant consult with other oncs in the area and alot at KU.
She has talked about a clinical trial I could get into but wanted to start the new chemo asap. We will see about clinical trials of other meds after a few treatments of this cocktail.
My first time around, I was going to the local onc in Manhattan, I was suppose to have Adriamyacin/cytoxin then taxotere. I had an allergic reaction to Adriamyacin so I did cytoxin/Taxotere. I had treatments every 3 weeks from May till August. Lost my fingernails, but not many other side effects. The nuelasta shot was wonderful. I had energy and didn't have any bone pain or anything.
I found my 2nd lump, on the masectomy side mid October. At that point i switched oncs. I did 4 treatments of Epirubicin, 5FU, and Cytoxin. Had my scans and the liver mets were still growing.
I am now doing Avastin, Gemzar, and Carboplatin. I seem to be doing fine. I've only had one treatment but haven't been really sick. I do get nausea after I eat. It's strange. I'll be really hungry, I eat then I feel like I have a lump sitting in my belly and I feel nauseaus (SP). I've also been really tired. I want to sleep all day and night. I will have the Gemzar again on Friday and I'm suppose to work Sat. night and Sunday. Hopefully I'll feel ok. I'm not getting the Nuelasta shot yet. I'll do bloodwork on the 22nd and if it is determined I need it the onc will order it.
OK well I'm tired and need a nap.
Hang in there,
CindyKS
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Hi Wink - where in NM are you? I spend a lot of time in Espanola...have a house there...actually on Santa Clara Pueblo where my partner is...
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HollyHopes and Teresa,
Holly, I am right on the border of Texas, in Clovis NM. We travel thru Espanola every summer on our way to a Colorado vacation. Had our truck break down there several times. Will you be coming back to NM any time soon?
Teresa, I completed treatments on Oct. 4th. Otherwise I would be in my Drs. office requesting more Chemo. Not sure if it is an option now. After reading more information I feel I should have had more than what I did. I had four dose dense AC then 4 dose dense Taxol, 3 week lay off and 28 radiation sessions. I know the radiation took care of any cancer left locally but worry about whether I had enough chemo to kill floating cells (11/25 nodes). I know we all worry about that but being Stage IIIc I really, really worry. Tried to get a 2nd opinion at MDA but found out I don't qualify for that. If and when I have a re-occurrence(sp?) and want to get treatment there, then I am welcome to try again. Waiting for a re-occurrence kind of defeats what I wanted to do. Just found this out yesterday so I am still upset about it. I knew I might not qualify so I was surprised by the emotional response I had when they told me. It sure is an emotional disease isn't it?
Better go now, the kids want the computer.
Wink
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Hello
Dear Wink,
Has appointment this am Onc said after my 4th treatment we will talk about MRI I did ask for a see a concealer things at home not going real well I feel lonely and alone needed some affection not getting any and when I ask he gets mad. Keep me in your prayers
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Dear wvgirl,
I sent you a private message. Hope it makes it to you. Let me know if it didn't get there.
Keeping you in my prayers always!
Wink
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wink
Got your message thank you !
Saw onc yesterday he said after treatment 4 we will talk about MRI
I go Friday for # 3 and they will have me an appointment that will be for the Onc theraphist.
Take Care
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My dear friends,
I got the pathology report today and the news is excellent. No residual tumor was found, all five nodes were negative and so were the margins. At least for me, the neo-adjuvant combination of AC (x 4 DD) and T (x 4) worked! As you know, if you have read my first postings back in September, I had to make a case for myself to receive neo-adjuvant chemo because I believed that I could at least try to get a complete pathological response or if I don't have a positive response to the first set of drugs that I could be switched to something else that could work. I'm glad that I was able to do what I felt was right for me, even if I wasn't the prototypical candidate for neoadjuvant (the tumor wasn't within the cutoff point of bigger than 2 cm). However, it took a lot of effort, educating myself by both academic sources and by all your experiences. I wouldn't have asked for an MRI in mid treatment to find out whether I was responding well or not unless I had read postings by Sadie and Twink. That's why having this community is simply invaluable. Nevertheless, looking back, there is something to be said about knowing how your treatment is working or not in vivo. I know that neo-adjuvant chemo has its sceptics but I have to admit that I came out of this process a stronger believer in its benefits.
--Christina
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Wow Christina! That's outstanding news. Congratulations. You must feel fantastic about the outcome. I'm so glad to hear that Sadie and I were able to constructively contribute to your treatment plans.
T
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Hello, triple negs from a newbie to this board. I am not a newbie to breast cancer however. In 1999 I was dx'ed with stage 2a in the left breast, had a lumpectomy, 4 ac & 4 taxotere & 6.5 weeks of RT.
On my most recent mammogram my doctor found swollen lymph nodes under the RIGHT arm. My ultras, PET scans, MRIs, etc etc have all came back negative elsewhere. Nothing in either breast. Even my markers were normal.
My question is the following: If this is a recurrence, would it be considered metastasis since it's recurring in a different place? I don't feel any symptoms I think there is a term for a breast cancer that recurs on the opposite side but I forgot it.
I am supposed to start Carboplatin & Taxotere next week. I have a temporary condition of swollen vocal chords so surgery will follow chemo.
Sorry to be such a gas bag, I'm glad I found this site. -
Hello iris,
I'm confused. You're starting chemo without a definitive answer on the presence of breast cancer in your right breast? When it recurrs in the opposite side, I believe it's called contralateral. If the BC has come back (assuming they can find it, biopsy it and confirm it's the same type of BC as you were first diagnosed with), it would be considered a recurrence. If it's in your breast and axilla only, its a local recurrence and wouldn't be considered mets. That's my humble understanding of the definitions. I hope it's nothing and that you don't have to deal with BC treatment again. If you do, please come back here when you feel the need for somebody to talk to.
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Thanks for getting back to me so quickly!
Cancer cells have been found in my right axilla only. Nothing was detected in either breast or anywhere else in my body. I did a mammogram, ultrasound, FNA, core biopsy, full-body PET scan and MRI of both breasts, abdominal scan, liver enzymes, pancreas enzymes, you name it and NOTHING showed up. Strange! The tumor profile however was very similar to my original path back in 1999. So I wonder if this recurrence would be considered metastatic since it didn't reoccur in the same place.
Ideally I should have the surgery first but my vocal chords are recovering from trauma so I'm getting chemo to start.
My surgeon/oncology team is being aggressive & that's fine by me. Even though they can't find the origin it's being addressed.
Thanks again. -
WOW Christina Great News I was told by my Onc that after my treatments and before surgery that I may have the same results as you. I pray for the same results as you. I go today for my 3rd T treatment
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hi Wink...I travel to Espanola once a month. My boyfriend lives there....well - actually on Santa Clara Pueblo.
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Iris,
I'm sorry to hear about the new lymph node. It is my understanding that metastasis usually refers to 'distant metastasis', in other words in organs of the body other than the lymphatic system. You may want to check with your doctors because if indeed the new node is contralateral, it may not be considered a recurrence but a new occurrence. However, I may be totally wrong.
Good luck with it and let us know how it goes.
--Christina
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I just came across today some articles published in the recent Journal of Clinical oncology about pre-operative chemotherapy that were based on the conference sponsored by the NCI in March that I had told you about. You can find information for what type of cancer is suited, age, the meaning of complete pathological response (pCR), etc. that you may be interested in reading (see url below). They just got published (Feb. 10th) and they show the complexity of the issue, for example the different definitions of pCR (whereas for MD Anderson, pCR is defined as no residual cancer in breast and lymph nodes, for the NSABP protocols (National Surgical Adjuvant Breast and Bowel Project), pCR is achieved if the tumor shrinks more than 50%. There was a comment that not all patients who achieve pCR remain free of recurrence or the reverse (those who don't will have a recurrence) but they did say that "pCR after chemotherapy is probably most predictive with respect to relapse and death for ER-negative, Her2-negative tumors". Notice, though, the mitigator 'probably', so that doesn't mean they know enough and they even admit that pCR 'is not sufficiently robust end point and that other 'pathologic grading systems are under evaluation'.
So if you do achieve it, it may be a good thing but if you don't, it doesn't mean the end of the world.
--Christina
http://jco.ascopubs.org/cgi/content/abstract/26/5/791 (Statement of the Science concering locoregional reatments after preoperative chemotherapy for breast cancer: A National Cancer Institute Conference).
Once you get the full text of this article, you can go to the references and you may want to read the article by Rastogi et al., Wolff et al, and Gralow, et al. which are also available as PDFs or in Full Text for free.
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Dear HollyHopes,
Have you been to Espanola yet this month? Supposed to be snowing here today or ice storm. So far just very little rain and 30, not cold enough to freeze. We sure need moisture!
Does your boyfriend ever travel out your way? Are you originally from NM? I'm a native Texan and my husband grew up in Ohio. Both our kids born here in NM though.
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Hi Wink - my email is hhamlett@gmail.com
My boyfriend comes to LA every month. I'm originally from New England but fell in love with Northern New Mexico about 30 years ago and then fell in love with him in 1995 when I was on vacation there (I was living in LA at the time)...I lived in Espanola for 2 years when we were first together but moved back to LA for my kids school. There were much better opportunities for them here.
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Christina,
WOW! Great news for you! I am so glad you have had such wonderful results from your treatment. I also have learned much from this thread, especially from Twink, Sadie-Rose, and you. I am amazed at all the information and articles you find. I'm trying to do research on triple negs and I get bogged down so quickly, then get frustrated and too tired to surf anymore. I am amazed at how much new information you guys come up with, as I just can't seem to find it. Thank you all for the help and hope you give all of us. Wish I had found this site when I was in treatment. Think it would have helped tremendously and helped me avoid some of the doubt I have now.
Again, Congratulations on finishing treatment and the results! Hoping you get back to full strength soon!
((Hugs))
Wink
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Teresa,
How is it going? Still feeling pretty good? Per your question on the 12th.
I finished chemo in August and radiation in Oct. I am now in that awkward time of adjusting to life after treatment. Working occasionally helps keep my mind off of it. I can go from being swamped with doubts and depression or feeling confident and ready for life. Sometimes in a 30 minute time frame it seems I can go from one extreme to the other 4 - 5 times. I'm ready to stay in the confident and ready for life frame of mind. Working to get there.
Keep me posted on your treatment. Keeping you in my thoughts and prayers.
((Hugs))
Wink
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Dear Wink,
Thank you so much for your kind words. Like you, I didn't discover this site until after I had made up my mind about my treatment and I was forced to learn as much as I could, as fast as I could within a two-week period (I was diagnosed on Sept. 1st and started chemo treatment on Sept. 17th). But I did have a very good friend who used to be the director of a cancer center in charge of radiology and he was the first person who told me about pre-operative treatment and that was pivotal in my decision making. I promised myself that I'd do anything to stay informed and to inform others about this initially intimidating cancer (I'll never forget my reaction when I read in my biopsy report "poor prognosis" next to the 'high differentiated' type of cells). I wish someone had told me then, don't worry, this kind of high grade tends to respond very well to chemo. When my local oncologist suggested that I do 4 DD AC surgery and then 4 T after surgery, I had to show him the article by Dr. Harry Bear and others who found that T added to AC prior to surgery increased the complere pathological response to 26% from 13% (still low but not insignificant). Thank goodness not everybody has to do what I had to do and that in part because they go to big cancer centers but at that point I couldn't wait for a month to be seen at one two hours away from me and wanted to get going with my treatment. If I had known then what I know now (e.g. that pre-operative chemo tends to be better for women under 50 with triple negative but a multi-disciplinary team needs to be in place to monitor the treatment) maybe I'd have been scared to go that route in my small town. So some knowledge can be good but sometimes ignorance may be bliss
. You are done with your treatment, you are doing well and that's the most important thing. Try not to look back as much but forward. We can't control if or when cancer will strike back but we can try to move on and do our best not to have it come back. When I purchased my wig, there was a French woman who told me 'eat lentils everyday and you'll beat your cancer, you'll see'. I laughed because I love lentil soup and had been eating it every day that week. Maybe I'll have to eat lentil soup every day for the rest of my life
but that's OK. I can control my diet but not cancer. Let's hope my lentil soup or your secret recipe or two will keep it abay for ever.Christina
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Wink,
Hi there. Well, its five days after treatment and I feel horrible. But thats expected I guess. My white cells are probably starting to drop now, they do every treatment and by monday they are usually very low. I also am having cramps...again....I thought I would not have a period during treatment, no such luck...in fact I started on the 1st and ended on the 8th, it was heavy and now today I start AGAIN??? what is up with that? One more A/C though....just one more. So for those of you that did weekly taxol, how soon do you feel the side effects? One day? two? I know everyones different just trying to get a idea.
Take Care,
Teresa
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Dear Christina and Teresa,
Christina, I will have to try lentil soup along with flax seed, vitamin C, Niacin, Vitamin B7, tomato juice, etc. There's not really anything better to get one to eat healthier than a good case of cancer is there? Tried to eat healthier before CA but I now have a better incentive! Trying to not look back, but forward. For some reason that is tough right now. Right after treatment ended and up until the end of 4 months I was able to do that. Now, having a hard time but I will regain my positive attitude. It is just taking a holiday right now.
Teresa, sorry to hear you are feeling so bad. My "bad" days seemed to change from treatment to treatment. Are you receiving Neulasta for your white cell count? I sure liked getting one shot of Neulasta as compared to 7 of Neupogen (liked one trip to cancer center vs 7 trips). They give so many side effect drugs that sometimes you think you could rattle and slosh from all they put in and down you. Would hate to do Chemo without them though.
I guess it isn't surprising that treatment would mess up your periods as it plays a number on the whole body. Sure would be nicer to have no period instead of every 8 days or so. Hoping your body will "get used to" the treatment and settle down.
Wishing everyone a safe and restful weekend and Presidents' Day!
Your CA Sis,
Wink
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HollyHopes,
Sent you a private message. My email isn't working - again - but think pm works well.
Wink
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Just checking in
Well Friday went better than my other treatments
They were having trouble accessing my port before. They would MISS IT and then have to get another nurse to come with another needle and insert it
AGAIN !
Thanks for all the information that you have found and posted here.
Have a restfull and great weekend
Glad I will have off Monday yea 3 day weekend
This time we I went back to the get the port accessed I ask the nurse how long she had been doing this because I did not want a Newbie agin LOl
I explained to her what had happened the last to times and how much PAIN I was caused even with the numbing cream. They were telling me a 3/4 needle was too short the 1st time then the 2nd time they used a 1 in and it stuck out 1/4 of an inch.
The nurse was very nice and said that I only need a 3/4 and found that the problem is that when the needle is inserted in my port that my port moves to the left. I ask the nurse it I could request her from now on she said yes that I should not have to go through what I have .
So far so good on SE's from treatment and Nuelasta shot. Just tired and lack of sleep from steriods Although this morning when I woke up to go the the bathroom I feel flat on the floor my legs gave out. I have a big bruise and knot on top of my foot. Ouch
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Hi, Teresa, wvgirl, Wink, and all others.
Teresa, I had similar problems with my period during AC but then it stopped during Taxotere and started having the side effects of nightsweats, hot flashes, and wakefuleness during the night. I'm waiting to see if this was temporary aminorroia or permanent, but honestly, I don't know what was worse, so hang in there. Some people have aminorrhea but others don't, it all depends. My hair started to grow in the mid of December (I've got one inch now!!!) while I was on the 2nd Taxotere treatment and other women report hair growth a month or so after all treatments have finished (my eyebrows are still very sparse, though and so are my low ayelashes), so go figure...
vwvgirl, I'm glad you were able to find a skillful nurse and that you're doing well with the Neulasta shots (I had 8 all together although I don't think I needed it that much but no problem with infections, so no complaint there). You shouldn't have to deal with port pain. As if it isn't enough that you're getting chemo...And sorry to hear about your fall. I hope you heal fast. I had a lot of trouble with sleeplessness from the steroids during AC and for about 3-4 days during Taxotere. I did try 1 mg of melatonin (over the counter from Health Food stores, etc.) because I read that they are doing a trial sponsored by Harvard on sleeplessness with .4 mgs versus 1 mg. It did work some but not that much during the steroids. It has helped me though with wakefulessness caused by the aminorrhea.
Wink, it is very natural to go up and down before, during, and after treatment. That's why we have each other so we can exchange some cheers and provide some well-needed optimism to face this new reality in our life. Just one week before my surgery, I reached my nadir when during the pre-op physical, my primary care physician told me that she felt a new lump on the same side of the original tumor, was apprehensive of my EKG and had me do an echocardiagram (it came out fine eventually), and also was concerned that the walking pneumonia signs were diminished but still present on the chest x-ray (was diagnosed on Dec. 21st originally). I felt the whole world was collapsing and that I wouldn't be able to have my surgery. I didn't post any of this because I was secretly hoping she would be wrong although I knew she cared for me a lot and she was being extremely cautious. It all turned out to be a storm in a tea cup, as you know
but talking about going from nadir to apex!!! So I'm bracing for more of these extremes to come either induced by others or by just me...Enjoy your Sunday and Monday!
Christina
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Dear Friends,
Just to update you, I had my post-op visit this past Monday at JH and everything seemed to be fine. The surgeon's comment about the path report was 'it's as good as it gets', which was such a welcome change from seeing the initial pathology report and having the 'poor prognosis' statement next to Grade 3 in addition to the triple negative report...
Next I had a visit with the rad oncology doctor and there was some discussion about whether I should have radiation of the axilla. However, since pre-operatively there was no clinical manifestation and the ultrasound and Pet scan were clear, and the path report after surgery showed all five lymph nodes from the SNB clear, we will proceed with just whole breast irradiation and a boost. FYI, the protocol at JH is to do a FNB of the axilla lymph node prior to neo-adjuvant but not everybody thinks it is necessary including my surgeon at JH who has written a widely-cited article about the accuracy of the SNB at surgery after pre-operative treatment!
There was also some discussion about the pros and cons of breast IMRT (intense modulated radiation therapy) either linear or inverse versus 3-D conformal radiation but the doctor seemed to think that there is not enough data to indicate that IMRT is superior to conventional treatment. I've skimmed through 15 abstracts and papers from PubMed on IMRT and breast irradiation and some studies argue that there is benefit, while others found mixed results (see below for a short summary if you are interested in the issue). A friend of mine who was Asst. Professor of Radiology at a cancer center and former director of a regional cancer center has now his own radiation clinic and strongly believes in the benefits of inverse IMRT. But he also told me that not all women because of their specific structure are candidates for IMRT. I'm doing the planning next week and we'll take it from there. Even if I am a candidate for IMRT, we have to see if the insurance will pay for it because it depends on the state that you live in...
Two days later I saw the medical oncologist at JH and they told me that the protocol I used (AC plus T) would be the one that they would have recommened if I had gone to them in the first place (I couldn't because there was a one month waiting period). They also confirmed that with or without cPR (complete pathological response) there is nothing further to be done but follow-up (although in some cases they weigh all the facts and they decide on a case by case scenario). Their protocol for follow-up is a digital mammo ever six months for the affected side and every year for both (I asked about blood counts but they don't use them). They also recommended genetic testing since I am under 50 but I told them I had already done that and I was negative for that as well (does that make me quadruple negative?
).About the port and its removal, the radiologist said it would be preferable to remove it prior to radiation since 'it is a foreign object' and it may cause some infection but it can be done after radiation. I may take it out prior to radiation if I can schedule it.
I'll let you know the outcome of the radiation issue which I thought it was a non-issue...Thanks for 'listening'
--Christina
My own brief summary of what I read about IMRT (I'm not summarizing all articles):
Beirmeister et al. 2008, report that IMRT reduces the chance for contralateral cancer for young women less than 45--I was 46 when diagnosed-- but then there were others (e.g. Beckham 2007) that talked about how 'healthy tissue received low doses' and that 'the standard plan showed limited ability to predict the benefit from IMRT'. And yet there is one study that shows the superiority of IMRT (Harsolia 2007, "significant decrease in acute dermatitis, edema, and hyperpigmentation and a reduction in the development of chronic breast edema compared with conventional wedge-based RT"). And finally, there is the study by the MCV rad oncologists (Dogan et al. 2007) in which they found that "The use of IMRT improves breast and regional node coverage while decreasing doses to the lungs, heart, and contralateral breast when compared with 3D-CRT. Doses to esophagus, thyroid, and humeral head, however, were increased with IMRT."
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hmmm...I administered my neupogen shots to myself...just asked the MD, he agreed and sent me home with a supply....no problem at all...just grabbed a bit of belly fat and went for it...
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