TRIPLE POSITIVE GROUP
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Yay Goutlaw! And Nicky, get better, keep posting. We missed you! And Special, I have a good feeling about your healing.
Cypher, you worried me with your post about plants from the box stores. I'm like Dance and Geewhiz and can't grow a seed to save my life, although I do have a green thumb. I need the nurseries to baby them for me (see, I understand why they call them nurseries--I envision the plants all wailing for sun and water, in their little plant cribs). Thanks Special for the info. I grow tomatoes, jalapenos and basil and then can, freeze, pickle, pesto away for food all year.
So I'm in a job where I put my company's products in front of FDA and then duke it out for awhile to get them cleared for sale in the US. We've all watched the Mammaprint people with a great deal of interest. They have been doing what we call "claim expansion" with FDA mostly by increasing the "population" their test is cleared for (i.e. if you note with drugs, a lot of them are launched for use in, say, Stage IV breast cancer. Then over time the company does the clinical trials for Stage III and then I and II). But at this point Mammaprint is only prognostic for recurrence. They haven't gotten approval for therapy selection, but they could in the future. They are on fire with FDA...I get jealous, although I know they don't have an easy time getting approvals. None of us do.
I'm wondering how the newer drugs for Her2+ will affect whether you get tested with the risk profile tests in the future...I'd like to know more about my risk status beyond Her2. Interestingly, my boss had almost my exact diagnosis, and her MO ran the OncoDx test on her. He told her that barring the Her2 status, she had a low risk of recurrence. He said he always withdrew that factor from the equation now that we have Herceptin. She came back as low risk with chemo and Herceptin. She was at a different health system than I was. My MO never mentioned the testing to me and I just assumed with Her2, it would be useless. Now I wish I knew.
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Cypher
Ditto Special K again . The trial I am in is called NBrest by Agendia the Dutch company that makes Mammaprint. I was one of the first and I am 2 years out. Have my 70 gene printout.
This and many, many other trials around the world are working toward more specialized treatments for BC.
Last summer a huge worldwide study announced that there are in fact at least 10 different sub types.
A lot to be hopeful for.
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Oh, and quick Q for yins. I'm dealing with some seriously annoying neuropathy in the balls of my feet from my taxol treatments. I seemed to be sort of better last summer, maybe because I wore sandals and went barefoot all the time, or maybe I just thought I was better because it was way better than what I had right after ending chemo?
Anyway, any good suggestions on how to maybe treat or help before asking my MO for Gabapentin? I'm not in pain, but my feet burn and annoy me all day long. I am peeved because I've always had pain-free, happy, joyous peds and now they are mighty feisty!
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Hi Pbrain!
Got to say a big thank you to you and all my heroes in bio medical research! For all the Dr Dennis Slamons..HERO.. There are thousands of researchers and years of work who make these discoveries possible!
And... While medical privacy is a very personal decision I would encourage you all to consider sharing your info to help those who follow. Carefully and with a great deal of diligence of course.
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PBrain
Can't help with the neuropathy sorry... Have it in my hands too but gotta thank you again for endorsing Latisse for lashes. I have eyelashes again.... For more than 3 months at a time too! Yippee ! Each lash costs me about $5 but it's worth very penny!
My hair... That's another matter.
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Yes I am I was worried sick! Plus I went to gym today& Finally meeting with trainer tommorrow!
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hi ladies, sounds like many of you have participated in clinical trials. I am considering being on one for kadcyla . The only problem is ..my treatment center is not yet fully approved, they have been waiting for weeks for final approval from Genentech but still remain in limbo. So if I want to participate I will need to switch cancer centers to one that is 1.5 hours away!! Got a lot of thinking to do..
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Pbrain I have neuropathy in my left heel. It gets worse when there is going to be a major weather change like snow or rain. It tends to be better in the summer. My feet burn if I've been walking or on them for a long time... but all the Anastrozole/Armidex gals complain of the same issue. I'm really hoping that it gets better once of off it. I did take Acetyl-L-Carnitine to prevent neurpathy during chemo after the 1st TX. I did have pins and needles in my left and and both feet. Never got that again. I still take it because it's a memory booster. Not sure if it's helping with the nueropathy too because I've never stopped taking it. There are some B vitamins that a supposed to help but I don't know which ones or what dosage.
goutlaw Yay you went to the gym! And a trainer tomorrow.
ashla ditto. This is a great study to be a part of. I need to do it myself. It's the HOW study. This is a Dr. Susan Love study: linky
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girlstrong, i think that the one my MO was talking about but i am not qualify for this trial
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pbrain.... Why did you have taxotere and then taxol?
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sorry again to freak y'all out with the wrong info about the plants. I still have to look at what I was thinking of, I obviously misremembered it. I feel badly about it b/c I have gotten such great info from you all!
goutlaw, good for you!
minor update re the leg pain, I saw MO today and he went ahead and ordered a bone scan. Said he wasn't worried about it but we should do it just to be sure. Naturally, it will take two weeks to get me in for it, which is fine if it's nothing... Aaargh.
I sort of wish I had had a mammaprint anyway, even if it was out of pocket, b/c of all the info that is coming on line. The people running the aphinity study have probably ran all kinds of tests on my tumor, which is probably sitting in a lab somewhere in Europe ... but with no possible access to that info, it doesn't help me.
princess, re pbrain, the short answer is she had a really bad time with the taxotere so her oncologist switched her. (Industrial strength GI distress that landed her in the hospital).
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I have been trying to get a straight answer out of dr. google on these test results (we did some blood tests today). What I am seeing is -
neutrophils - in normal range but trending down
basophils - in normal range but trending up
eosinophils - same but trending down
lymphocytes - trending up as a %, and down as an absolute
monocytes - trending up as a %, down as an absolute
MCV - trending down
Or maybe someone can refer me to a good website where I can look this stuff up? I did notice that taking antihistamines can affect this -- I took a Claritin the night before last and some nasal spray last night (TMI!)
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cypher I wouldn't really worry about the types of white blood cells. Just the total. Unless the nueutrophils are down near 0. It can drive you crazy. And they change pretty fast. your MO is watching them. As well as the red blood cells. If your numbers are too low on white cells you get Neu last a or neupogen or end up in the hospital. If you get too low on red cells you get a transfusion. And the NIH Web site Is Pretty good. It's medicinenet.com
Look up CBC. Complete blood count. That should help.
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on the genetics testing, I thought you might be interested in a city of hope genetics registry. It is not a trial, not anonymous. They are collecting DNA from 15,000 persons with BC or high risk of BC. For use in research.
I'm also getting a 25 cancer gene panel done by myriad which covers 8 other cancers. Myriad is doing this as a pilot (not trial) so it doesn't cost me anything. I only have to pay for the BRAC testing. I think the myriad pilot is only available through the end of this month or next at 100 sites (Johns Hopkins is one of them).
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Having a bad day today - went to my MO for the first time yesterday and liked him very much but when they were taking my blood and I could see the chemo chairs I started tearing up and have been weepy every since. I was really doing good until then - i think that visit just made everything so real and brought up all the fears and the unknowns.
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Linda I'm sorry it hit u at one time, but really it will be OK--they are so nice and u'll meet other people and it is funny cuz all of a sudden it's u, not the other u. It's OK to cry and be apprehensive--but everyone here will be so helpful to you.
And everyone knows I know nothing again about blood work so I can't help--All we did with them was play liars blood tests and whoever was lowest won.
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Linda, fear of chemo is very powerful for anyone who has had to face it. However, you will find that your fear and dread of it are probably worse than actually undergoing it, emotionally, that is. Since everyone is so different, our reactions vary from person to person. We are glad that you have come to this thread. The ladies here are so helpful with any questions you may have, and the support you will receive is second to none.
I wish you all the best as you undergo your treatments. Even though the treatments and after math can be brutal, I am grateful that we can be treated and hopefully live for many happy years.
Yes, crying is allowed and very normal. I know that I shed many tears during 2013. Also, for really good support, become a part of the group whose chemo begins the month that yours does. The support and info you will receive there will be priceless.
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Linda I met a gal on BCO over 1.5 years ago. She was petrified of chemo. She was petrified of losing her long hair. I met her in person when she went for her 2nd opinion (which happened to be with my oncologist). Her husband told me she had stopped talking (except to me thank goodness). She was hoping that my onc told her she wouldn't need it. She was really considering not doing it.
She did make it to her first chemo... and it was all uneventful. Oh and the hair thing. Well it ended up I look like I could be her older sister. She saw my hair and liked it. She now keeps her hair short. Her mother, who was more upset about losing her hair than she was told her to keep it short about a month ago! She looks fabulous and is doing well.
Hang in there. Chemo is not like you see on TV.
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Thank you all - I really don't think it is the Chemo that I am scared of - and it isn't losing my hair - my hair sucks anyways - has for years LOL - ever since menopause - maybe it will actually come back better lol. I really think it that the totality of what has happened hit me at that moment for the first time. I think it is just fear now - and mostly of what I don't know yet - like it is in my lymph nodes, has it moved anywhere else - those things. I am so glad that I can come in here and say these things - no one seems to understand here - my husband is great but he just doesn't know what to say and I know he is scared too. Thanks again so much!
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hi Linda, you can keep your hair with the cold caps. It doesn't sound like you will probably go that route but I just wanted to make sure you knew you had options!
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Linda don't sweat the node. Sure it's better not to have it but I know many women, grade 3 with many nodes that were diagnosed the same time as me that are still NED. Also the likelihood of distant mets is low for you. Lets just say things are looking good for your so far... go with that until someone tells you otherwise.
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linda, we all had that moment at some point when everything hit us and it became "real". Tears, anger, fear. They are all normal. The ladies here will be here for you every step of the way. And when nobody else understands, your BC sisters will.
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moon, thanks for the input about the blood count. MO mentioned it to me, that I might be a little anemic. But I just got the other part of the test results back and my iron, ferritin, and iron binding capacity were right in the middle. Iron saturation were low ... I wish I understood this stuff better! He said it was just something to be aware of and not related to cancer (i.e., no need for me to kick into hypochondria mode over it). The thing that does worry me is that some of these cells are important to my immune system and THAT needs to be in good shape! It's just kind of odd b/c it's so far out from chemo.
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Linda and other newbies
agree with everyone. I think I can safely say each of us has been where you are right now.... And we're all here now living our lives and moving forward from that place.
I was lucky because I had neo adjuvant chemo and started less than a month after DX. I didn't have time to even collect my thoughts when I found myself getting my port placed on Halloween and using it the following week! Walked around dazed and confused for months!
It ain't easy and some of us have a harder time than others but you will get through it all just as we all did. I was one of the fortunate ones with very few unmanageable side effects. We call it the Express. Some take the Local or " scenic route" with all the stops.
There are wonderful, knowledgable ladies in the forum who have experienced personally or who know about all of the problems that arise.
One of my personal regrets that I to pass on to you who follow is that I didn't keep a diary. I believe it would have been an enormous resource to me medically, psychologically and as a resource for others.
Best wishes and know you have wonderful friends here to help you every step of the way.
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Linda I think Ashla is right (altho I didn't do it either) but it's always been said when u are going thru something traumatic it is good to keep a journal of u'r feeling or what has happened that day--it's like expression of thought whether anyone hears it or not. U do--but of course remember everyone is here too.
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Princess, I'm a rare case. I had one treatment of TCH and ended up in the hospital. I have an idiotic aversion to taking meds (which has definitely been cured by cancer) and I felt fine the first day after the treatment, so I didn't take the anti-emetics. By the second day, I couldn't keep them down anymore-- I was vomiting a lot. I ended up dehydrated with neutropenia, so I was thrown into the bubble-people ward at my local hospital for 5 days. After that my MO took pity on me and moved me to weekly taxols. I did ok on that, but had some really rough side effects...took the scenic route as Moon would say...had a transfusion of packed red blood cells due to anemia...lots of neuropathy in my hands and feet (so they kept dose reducing me) and hemorrhoids like a fire in my soul (I used to cry when I had to go to the bathroom, which was a lot of times a day...ugh, I don't miss that).
But I got through and am pieced together again :-)
And thank you Ashla for the praise. I have to tell you that biomedical research can be pretty discouraging a lot of times because you feel that what you are working on may never make it to helping patients. But after going through BC, I know for sure a lot of it does. I agree, those who work in that field are heros in my eyes too!
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Cypher, your blood test results are fine. The trending down of MCV is a very good thing. Mine was high during chemo and took awhile to come down. I was pretty dang anemic.
The trends in a lot of blood cell parameters are transient. Your neutrophils go up with infections, eosinophils go up during allergy season, etc. You don't have to worry. Being in the normal range is all the info you need
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Linda, my advice, for what it is worth. Buy an iPad. Get streaming Netflix. Spend each and every hour in that chemo chair watching re-runs of Fraiser. There are 11 seasons on there. I laughed until I cried sometimes at chemo, and I just didn't think about it at all. However, I do know your feeling because I remember feeling very alone and very sad during my radiation treatments. Everyone left the room because they couldn't be in there...just me and this big machine in a dark little lead-wall-lined womb. I worked my mind around it and began to realize it was helping me and to just bag the sadness.
I like what Honey said--years of living happy and disease-free! Seriously, watch Frasier.
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PBrain I'm not trying to be sarcastic really--but u know my limit of knowledge--with blood testing if there is a problem don't the Drs. call u and tell u they don't like this or that or take something or go to the hospital. I always just assumed if I didn't hear anything (which u usually do anyway) but sometimes it took longer meaning it was OK, cuz if it wasn't I'd get a call the same day ---well that's how mine was I just assumed everyones test was like that.
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Cami, you are right on the moola. My background is in clinical pathology, and I remember the discussions we had when the hospital I worked in was going to "patient portals". We were all worried that if patients could see their test results and anything looked even slightly off, they'd get upset. A lot of times test results are weird because you've had a cold, or blood was drawn early in the morning, or you're not totally fasted...some little oddities can easily be explained by another little oddity, kind of like a see-saw. The doctors look at this and say "no big deal, it is low because this is high, it will right itself". But the patient sees it and gets worried.
I'm with you. Wait until they call. My doctor put me on a diuretic to help with the swelling I was dealing with from the steroids during chemo. It didn't agree with my kidneys. Within two weeks my creatinine went to 2.6. You better believe I got a phone call! tee hee....
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