A new triple negative friend
Comments
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It goes without saying that I was in shock at time of diagnosis this past July.
The biggest issue for me was the realization that I've been running these stupid 5K's for so long and we still don't have a cure for cancer. It's stupid, but it doesn't hit you until diagnosis. Being an oncologist is a trip to Las Vegas everyday. Just a bunch of probability and statistics...roll of the dice, crap-shoot, luck of the draw...add your own vegas cliche here.
I hate vegas.
Skippy
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I want to thank those of you who keep posting telling us that there may be hope down the road whether it is a couple of months or a year or more than that.
I also feel very disappointed (I could have used a stronger word but I am trying very hard to stay as positive as I can just before my third treatment tomorrow) for those of you who report that not all all options were presented (I know from my personal experience that I'd have fallen in the same category if I had not had some outside guidance and personal research) or even worse that not maybe the best decisions were made at the time, and even further the lack of guidance during and after treatment. That's why we need to keep educating each other with whatever information we dig but also to keep in mind that if something worked for one of us, it may not work for another. I love you all my triple negative friends out there and I hope we stick together to hear both the good news and sometimes maybe some bad news but let's all not forget that no doctor knows everything and they may sometimes underestimate our power and willingness to keep on living. --Christina
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First of all, I just wanted to thank Sadie and Twink (you must be done with your treatment, right? Congratulations!) for their guidance about how to assess how the tumor is responding to neoadjuvant therapy in the midst of the treatment. Having learned that they had MRIs done, I requested one from my oncologist and I'm having one done this week (just before the fourth treatment of AC). Clinically, we have had a very good response but based on what I also read, you can't tell exactly how the tumor is responding to chemo based on clinical examination (especially when it is rather small <2 c.m). Some research at SFU has tried to correlate complete radiological response with complete pathological response (assessed at surgery) with some promising results, so I used that as leverage as well for my request for an MRI in mid-treatment. My oncologist told me that he would be able to see the degree of necrosis by comparing the pre-treatment MRI to this one so I shoull have some news for you soon about the effectiveness of AC on the tumor.
On another note, so far, I have been able to tolerate AC better than I had feared but I'm very apprehensive about starting with T (taxotere 3 x4) because of what I've read about neuropathy (I start on Nov. 14). I guess I'll find out very soon what is in store for me... Christina
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Congrats on getting through the treatment. I had a pretty easy time with AC and Taxotere. The Taxotere just made me really tired (fatigued actually) and my taste buds were funky. But I went to work everyday during both and through rads. Very do-able for me.
It's been over two years since treatment ended (woo hoo). If I remember correctly, Taxol has more neuropathy issues than Taxotere.
Watson
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Thank you for your encouraging post about Taxotere, Katy. I'm almost done with AC (one last treatment on Oct. 29th) but I'm getting there
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Christina: I am also trip. neg. I finished Taxotere and Cytoxin at the end of June this year. Taxotere wasn't bad. I hear that Andrimycin is much worse. I had metal mouth, leg pain (but found that walking helped, even if I didn't want to do it , I did it anyway) and had bad flu-like symptoms for 3 days approx. 3 days after treatment. My legs were very tired and remain tired to this day. However, I did not have ANY neuropathy and many others I know did not have neuropathy either. So, good luck to you. I think you'll do fine!
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2curvy,
That's the type of fatigue I had for months after chemo. Is it hard to get out of chairs, cars, etc? I swear that gets better.
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First of all, I apologize for addressing you as Katy, Watson. I'm still getting used to the appropriate heading of a recipient's nickname
. I've done it once more with Twink but both of you were very nice not to mention anything.That's encouraging about Taxotere. The fatigue will be an issue but if it does get better with time, that's all we can hope for. As for the flu/cold symptoms, I have had those in the last treatment (#2) just about when I stopped taking Decatron with the Emend (dry coughing but it became intense with some sputum). They gave me a cold medicine (Robittusen sp.?) and that seemed to work. I just started having the same kind of coughing but it is not as extensive as it was before. There must be something related to Cytoxin, I presume, since you didn't have Adriamycin, 2scurvy.
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In case you didn't read this from another thread.
Update on whether AC worked. As some of you know for Neo-Adjuvant therapy, response to treatment could be different from a clinical point of view, rather than a radiological, or pathological (during surgery). I was told by both the onc and onc surgeon that they 'couldn't feel a thing' (so clinically, they thought I have a complete rsponse) but a rough reading from a local radiologist said that there is still a diameter of 1cm left (note that I didn't get the full volumetric picture). I'll let you know once I get the official MRI report.
I just had 4th AC treatment today. Hurray! Now we move on to taxotere land. -
Official radiology report states the mass shows significantly less enhancement and measures (1.2 x 0.9 x0.8 cm). So although both doctors couldn't feel it, it is still there after 3 treatments but 1/7 of its original size. I guess AC is working. However, the new MRi reported a 4mm focus of enhancement in the same breast about 2cm lateral and 1 cm inferior to the dominant mass in the right breast without definitive change from the prior study. Well, they didn't report anything like that in the pre-treatment MRI so I don't know what to make of it. In the final conclusion they just report about the decrease in size and enhancement of the known malignancy but nothing about the 4mm focus. That was very upsetting to me.
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I am triple negative and it was called stage four, and then they called it high grade cancer. My surgeon did a lumpectomy it was really high on the chest, maybe if I had boobs it would have been in the breast. But I just did my last chemo ( I hope) I'm now in a study about 5FU and some sort of enzyme deficifiency and they just took a genetic sample last week and told me 5FU could be very toxic to me if I don't have the enzymes to break the 5FU down right. Apparently I may have to have more chemo or a total blood transfution (did I spell that right) chemo brain. Well now I wait. My radiation is supposed to start in Dec. and I have a chance for rapid radiation another study and I'd like to do that instead of more than a month of radiation then the boosts. So now it's all up in the air and I just am not sleeping again I just keep wondering and wondering. And praying that I have the enzymes especially if someone else in my family gets cancer. So many thoughts that just won't stop I think I've slept 6 hours in the last 4 nights. It's always the waiting and wondering. I didn't even know there was such a thing as triple negative and high grade. Plus they chose me out of thousands for the study because I had alot of problems with viens and side effects it's really got me scared and wondering. AGAIN
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Dear pearl49,
Thanks for sharing your story. I certainly hope that you have the enzyme you need for the study but I'm just wondering did they do a the sentinel node test and found anything or is the treatment preventative and experimental? I also hope you can have the rapid radiation therapy. I heard that is equally effective especially if you don't have any lymph nodes involved. Try to think positively and not worry too much (I know it is easier said than done) but you know you've got your treatment and you may be getting more but at least you have things under control and this is great. I've started the second round of chemo with T (I finished with AC) and I haven't done surgery yet...At least I got the BRCA test back and I was negative for that (no mutation for either one of them) but as you said it is always waiting and wondering but we've got to get used to this from now on since even when all of this is done, we'll have the check ups and follow ups to deal with. Hang in there and let us now of your news. -
How are you doing Negative 3?
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Hi, 2curvy.
Thanks so much for asking about me. I hope you're doing well. Has the pain from T subdided for you?
Yesterday I had my 1st Taxotere and I'm just waiting to see what side-effects I will have. Except for some minor edema by my left ankle (I guess I'm spending too much time on my computer:-), I survived the AC fairly well. I'm of course anemic (I used to have a HCT of 41 and now I'm 30) but I'm managing all right. Thanks to the Neulasta shots I had no problem with the white cells thus far but let's see how T will go. I've been reading about T causing problems with nails and that some peple have tried tea tree oil and some went for hypothermic gloves ($115 but they last for only 45 minutes so they recommend two pairs--ouch!). I think at this point I'll try the tea tree oil and see what happens:-) -
i was dx last april with stage 3b trip neg- we knew it was in lymph nodes already becos they could feel them and did a needle biopsy- we immediately started neoadjunct chemo DD 4 AC and DD 4 Taxol
after the 2nd AC the doc was amazed how the tumor shrunk
after a few more could not feel a thing - when they did the dbl mast and removed the lymph nodes patholigy report showed no sign of cancer anyway- i was sooo happy i had done the chemo first so i could know what an amazing reaction i had to the drugs
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Thank you for sharing the wonderful news, jdash. Having a complete pathological response and not just the clinical one is the best news one can hope for doing neo-adjuvant chemo since that is the best reassurance that you can get that the chance for recurrence is very low. Just out of curiosity, what size was the tumor to begin with?
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thanks so much ! i didnt realize how lucky i was to have a complete pathological response till my doc told me! the tumor was over 7 cm
very large and i had had a lumpectomy and rads stage 1 - 10 yrs ago and had been going for regular yearly mammos and sonos so you could imagine my surprise when i went for my checkup and found out i was stage 3- and the tumor which was so large did NOT show up on my mammo since i supposedly had such dense breasts
i should have been checked by MRI's annually since mammos did not work for me- one year later and i still cannot fathom that this can happen
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I can only imagine, jdash! I hope that there is a facility nearby that has started to use digital mammography since from what I read it is much better for dense breasts than the regular mammograph (even my small town's hospital is getting one next month...), if your doctor doesn't want you to have MRIs from now on. On the other hand, I don't know if you've read the poll on how all of us triple negatives found out about our tumor, but it seems that for many of us, the tumor just appeared in large size all of a sudden, even after a mammograph, especially if it is GRADE 3 (since it rapidly grows). I don't mean to excuse the mammograph people but I just want to point out that possible scenario. Celebrate your pCR (complete pathological response), jdash, and let us know how things go. It is so encouraging to hear stories like yours!
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Hi everyone. I'm new the the triple negative club. I have one more step I'm also stage IV with mets to my liver and lungs.
I was diagnosed April 3, 07 after a needle biopsy of 2 lumps. One was a lymph node. We did a masectomy on my left on April 6. I started chemo towards the end of May 07 and finished August 10. I was going to do Adriamycin/cytoxin then taxotere but I had an allergic reaction to the adriamycin so did cytoxin/taxotere. I was ER+, PR-, HER2-. Middle to end of October I found a lump in the muscle tissue on my left side. We did a CT scan again. I'd had one on August 27 and it was clear. The new one October 23rd showed the lump and what my onc didnt say the report also mentions possible mets in my liver and lungs. My onc wanted to do a biopsy and they couldn't get me in. He never mentioned anything about my liver and lungs.
I switched oncologists. I'm now going to the cancer center that is 1 1/2 hours from my house. But I am happy. The did the surgery to remove the lump and were going to do a complete hysterectomy because of my ER+ status. The new oncologist and my surgeon were both at a cancer board meeting that morning and reviewed my case. The determined that my ER+ status was so so low it could be considered negative. So 2 months after I finished chemo I'm suddenly triple negative with mets to the lungs and liver.
I started chemo again the Monday before Thanksgiving. It was scarey. I'm getting:
Epirubicin, its red just like adriamycin. I did fine. No reaction. They gave it to me slower than you normally get it and that could have help. They also gave me lots of benadryl before hand. I was watched pretty close while getting this one. There were taking no chances.
Fluorouracil (5/FU) no problems with it.
and last but not least
Cytoxin
I'm a little worried about the 5FU since I read:
Pearl49 and what she wrote. I'm now in a study about 5FU and some sort of enzyme deficifiency and they just took a genetic sample last week and told me 5FU could be very toxic to me if I don't have the enzymes to break the 5FU down right. Apparently I may have to have more chemo or a total blood transfution (did I spell that right) chemo brain.
Please tell me more about this since I'm taking the 5FU now. Should I talk to my oncologist.
Ok I've rambled enough thanks for reading and any comments would be helpful.
CindyKS
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Hi, Cindy, KS.
I've heard of other women doing 5FU but not having been tested for the enzyme that Pearl49 was talking about. However, it won't hurt to raise the issue with your oncologist while seeing what other postings we get about 5FU. Good luck with your treatment. It is very encouraging that you're doing very well thus far.
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Hello Everyone: Had my birthday party and should change my name to pearl50. It was great and not as weird as I was afraid it was going to be. But, and there is always a but. My sister gave me the news that her family doctor had found a lump under her nipple and it was mamod and now on thurs. they will do an ultra sound and maybe a biopsy depending on how the ultrasound looks. So I'm absolutely terrified for her. She is 47 and with my cancer and the triple negative I'm so afraid for her, she is really clueless just as I was until it was recommended that i join the triple negative group. I asked her to tell them I'm triple negative and she already knows about my liver so hopefully they will biopsy this lump no matter what. I don't know if thats even the right thing for them to do, I just know how badly I was misdiagnosed so I really want her to cover all the bases. She proudly said to me they are catching it so early I won't need chemo or anything. I didn't have the heart to tell her anything more. But when the biopsy comes in if it is cancer we will have a really good talk and I want to recommend she join this site. I can't believe how all consuming this worry for her is and I'm just praying she will be okay but I don't know the stats for tn and family so I'm just worrying and praying. I'm wondering how many families have more than one triple negative person in it. Just worry, worry, worry. I tired of it but can't stop and wish I could. Well wish us luck. And my eyes are still tearing like crazy and I can't wait for it to stop. Bye for now.
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Pearl now 50,
The sister's I've meet who both ahd bc... always had to different types on bc. My sister just had a scare...thank God it wasn't cancer! But she is running scared with my bc being so aggressive. They did go ahead and do a baseline MRI for the future.
Hopefully you will not have to have that talk with her.
Living in hope,
FlaLady
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Hi Riley: Yes I think you should mention it. I'm in Canada and they don't test for this before hand. After the Onco asked me to be part of this study I went home and looked it up on the Computer and they've known about this since 2004 and that upset me. I haven't heard yet about the results, the onco nurse explained I might not here for months and I told her I was not happy with that and I was calling the Onco doing the study as I want to know asap. I have a few posts on this issue but I have to find the info they gave and you can look it up yourself and ask your Onco. The more info you have the more you'll get out of them. So I'll hunt around later today. I'm up early today nervous about being tatood for rads so I'm going to read some of the womens' experiences hopefully good ones, I read a bad one and it scared be silly, but then there were some women that said it wasn't bad at all that what I need to read right now. But Riley I will get you the proper name of the enzyme deficiency. Pearl
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Riley I found it, amazing for me right now I lose everything. Here is the name you can look up on the net as well as talk to your onco about.Dihydropyrimidine dehydrogenase (DPD) deficiency diagnosed through saliva and urine. There you have it. Hope you get the info you need. Pearl
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Hi, Pearl49.
How did you sister's US went? No matter what happens, at least she can rely on you for support and knowledge, but I hope that all goes well.
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Tomorrow I'm getting the second treatment of Taxotere and I wanted to share with you some information on L-carnitin that I got from a friend who had the same type like many of us, Triple Negative Grade Three, and was on Taxol. Her internist suggested L-carnitin while being on T and 8 weeks after finishing it to prevent the side effects of neuropathy. Like she was suggested, I started with 500 mgs to have my body get used to it for a couple of says and then moved to 1000 mgs. I wanted to say that I did find some studies that were done in Europe (Italy) with L-carnitin that showed that it had a positive effect on neuropathy (it even reversed it) for patients on Taxol and Cisplatin. When I told my oncologist about it, he said fine, but each oncologist is different, as you know, and even mine did not approve my taking glutamine from non-natural sources while I was on AC, unlike some others who have approved it! I can provide the references, if you are interested in reading about L-carnitine.
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I was wondering if anybody has been on Repliva before for iron deficiency. My oncologist prescribed it for me since my RBCs have been lower than normal and I have two more Taxotere treatments to go but I'm wondering about its efficacy considering that the anemia is caused by the chemo. Thank you in advance for any insights.
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Just reading through this thread and I was interested in neg3's comment about L-carnitine. I just found this abstract : http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&uid=17696592&cmd=showdetailview&indexed=google
Does anyone know anything else? Is this available over the counter? I'm just about to begin carboplatin and taxotere, and worry about peripheral neuropathy.
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Hi, Brenda.
I just got mine at the vitamin shoppe but GNC carries it, too. In Europe is over the counter but not here. I read the abstract you cited and went with the recommendation I was given from a triple negative friend. So far I had 3 treatments of taxotere and not a proble with neuropathy. Good luck with your treatment. I hope it all goes well.
--Christina -
Hi Christina...I was thinking about you recently. Are you finished with Taxotere yet? It's been awhile since I posted on this thread but I should let you know that I'm almost finished radiation...5 boosts to go. What a year, eh? Let me know how you're making out.
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