2010 Sisters
Comments
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grannydukes- I think the American Cancer Society can help arrange transportation. Are you having your treatments in a hospital? Speak to your Onc and then talk to their social worker. They have lots of options and can help you arrange for transportation. This should not be something you have to worry about, just focus on getting better.0
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thank you sistas so much.i put this post on other threads and i got sooooo much infor and pm that tomorrow i will be working on this all day
God bless all of you.I pray for a cure for each and every one of us.
im trying to focus on getting better but with obsticles in the way its almost impossible.
wed is the big day with dr#3.i hope this is it.
i luv all of u
K
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I hope you get it all straightened out tomorrow, granny! The last thing any of us needs is more stress! And I hope all goes well with Dr. #3 - that's too stressful, too. Good luck on Wednesday!
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a giant hugggggggggggggg to all
thank you and God bless my sistas
K
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thank you sistas for all the info.after numerous calls the key word is TREATMENT...im not in treatment therefore i do not qualify...i have a ride for tomorrow and im not stressing about next week.one day at a time
God bless all of you.
K
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Granny!! MIssed you and here is BIG hugs coming at you. If I knew where you lived and could, I would drive you.
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THANK YOU BARBARA...
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Granny, you are so right about taking it one day at a time. I had a miserable day today with my 2nd chemo, and just have to believe tomorrow will be better. That is, if I remember everything I'm supposed to do to minimize SEs - about a million things. I think I better make myself a list. I know you will finally get everything straightened out and then settle down into some kind of pattern until you are well and through with this, and that will be such a long-awaited peace! I'm looking forward to that for you, and for all of us and we will finally get there!
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Hi Ladies!
I didn't realize it had been so long since I posted and it appears I've missed a lot!! Haven't gone back to review but I will. The drain was finally removed - boy what a relief that was! However, my breast incision is being very stubborn and not closed all the way, and this is now 18 days post-op and it's still leaking. I got the rest of the stitches out yesterday and now have steri strips across the entire thing, and it still leaks a little. I also have a warm, red area that sort of spans between my ALND incision and top of my breast incision, so I'm on Keflex for that, hoping it's cellulitis and not IBC. Butnow I'm back on "rest and take it easy" which is frustrating - I wanna go out and play before I start chemo and really feel crappy!
First consultation with oncologist was last Wednesday. Even though I only had micromets in one sentinel node, he still considers me node-positive, so no Oncotyp test and on to chemo starting Sept. 1. Apparently my micromets were there long enough to figure out how to divide, because there was more than one or two cells.
Has anyone been offered to participate in the "TEXT" study? I think it's for premenopausal women only, and includes a monthly injection for 5 years, and randomization into two groups - one on Tamoxifen, one on Aromasin. Also ovarian ablation may be part of the plan. I'm thinking about it because I really see no reason to go into temporary menopause and then somewhere down the line go through it again. I'm 46, done having kids, and so far don't know of any serious adverse SEs of shutting down my ovaries for good (either by radiation or ooph). Any thoughts?
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Hi MrsNice, I found this one
Aromatase Inhibitors in Premenopausal Breast Cancer Patients With Chemotherapy-Induced Ovarian Failure
at
http://clinicaltrials.gov/ct2/show/NCT00555477?term=pre-menopausal&rank=14
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MrsNice-Welcome back! So sorry to hear about your incision problems, hope they clear up soon. I am wondering why your doctor did not want to order the Oncotype DX, as it analyzes 21 genes and can give a lot of valuable information. I am very glad my doctor ordered it. Knowing my recurrence risk, based on detailed analysis of MY particular genes was very helpful to me with decisions like which chemo I chose. In my case, as my Onco score was "relatively" low, I chose a less toxic chemo. Had it been higher, I would probably have chosen the "big guns" even though they have more SE. All the stats from general studies are valuable, but knowing my own personal genetic picture was important. I think it will also help me with my decision on hormone therapy. In the many years to come, perhaps, knowing that the Oncotype says I am in a lower recurrence area, it will help me not obsess and truly move on. I think the test can still be run on your pathology specimen (they have to keep it on file?) if you want the test. In my case insurance paid for it as it was an important test to help decide whether chemo was needed. We have very similar diagnosis. I had micromet in one node, both my BS and Onc said chemo was my decision and felt the Oncotype would give more detail to help us decide. My Onc is more conservative and said she still goes by the "older" thinking that a micromet is still a positive node and she recommended some chemo. I think the Onctotype DX is cnsidered the cutting edge future of cancer treatment. In the past everyone sort of got the same treatment, now Oncs are using this test to help design a more targeted aproach. Best of luck with all these decisions. I must say, they are a pain in the A$$$!0
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Good morning. I hope you are doing well. Just back from my hairdresser's and had my head shaved. What an experence! I am fine, though this really is very telling and I think I will now be seen as "having cancer" (up until now, who could tell?) I placed a bandana over my newly shaved head and my hubby took me for juice at a local coffee shop.
take good care and just breathe. . .
Teklya
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Hi Teklya--was your hair starting to drop? I am thinking of doing the same and shaving it--probably in next week or so. Good for you. I'm not far behind you! Take care, Rachel
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Do you all have any advice for me? I am two weeks post lumpectomy and SNB and am swelling under my arm and up into my shoulder and neck. I think I did too much on Saturday and am paying the price. I go see the BS today but can anyone help - it is so sore!
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Omaz, The swelling would really concern me. I think you should get to your doctor FAST!! Is is red and hot? Do you think it is infected or do you think it is a seroma (fluid build up)?
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It is NOT red. I called him last night and he said to come in today. He thinks that it is seroma. It sucks though - I was doing so well and now this!
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Hello Everyone!
This is my first post - diagnosed on April 9th and started chemo in May as my surgeon thought my tumor was too large - and breast too small - to have a good cosmetic outcome for a lumpectomy. Finished chemo on July 1st and had my lumpectomy on Monday (August 9th). So am anxiously awaiting the pathology report to see if I have clean margins. All I can say is that so far nothing has been as awful as I feared - except the waiting. Chemo was manageable except kindof felt a physical breakdown after the fourth AC treatment on a dose dense schedule. I think it was four weeks before I felt "normal" after the fourth treatment. Wishing you all the best. It is a comfort to know you are all out there with so many of the same fears and anxieties. Here's hoping for a cure for our daughters.
T
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Omaz- Try not to worry. If it is just fluid building up it isn't a big deal. Around my incision from my node surgery it swelled up the size of an orange, very uncomfortable. My BS had to drain it 3 different times. They use a BIG syringe, but don't be scared. I swear I felt NOTHING, only takes a few minutes. I think it is because the nerves were cut during surgery, that's why we are still numb, really did not feel it at all. Best of luck and good you are getting it checked out.
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Thanks, that is reassuring!
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Hi Omaz--I had partial mastectomy on July 19th and everything was going great. I went to see my Oncologist on July 27th and I'm not sure if it was his checking or something that I did (I was feeling great so of course started to do too much) and then I was in emergency on July 28th as I woke up in the morning with fluid all around me and a large fluid build up. The emerg doctor said the fluid needs to come out of somewhere -- so they drained and had to put new steristrips on. Couple of weeks later and am healing fine and starting chemo on Friday. Hope you heal fast, Rachel
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DesignerMom: My understanding is that they don't run oncotype dx if you are node positive; the theory being that if you are node positive, you need chemo for sure. If you are node negative, it's more of an "either/or" and the test can guide you in a treatment decision.
Rachel: I promised somebody I'd send them a PM and let them know what my onc said today about FEC treatments. Was it you? I can't remember.
Regina
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ladyinbama- I think that might be the older protocol (node positive= automatic chemo). It seems the new thinking involves checking to see how agressive the cancer is with the Oncotype DX and then deciding on chemo or not. In my case, I had one positive node (micromet) and a "low" Oncotype (although the new Tailor trial would say it was medium). I actually had to say I WANTED chemo, just wasn't comfortable not doing it. Some well-known cancer hospitals actually won't do chemo if the Oncotype is low. I know one friend who had very low Onco and just micromet in one node and had to switch from a very renowned cancer hospital to another one in order to GET chemo, which she wanted. I have a feeling the Oncotype is pretty new and a lot of traditional Oncs just aren't ready to rely on it in decision-making. Believe me, I KNOW the feeling. I have never done so much research in my life. I feel like my brain is going to explode!
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DesignerMom: I'm curious; where have you read that the test is used for node positive women? I've seen only one reference to node positive women and that is only if your cancer is er/pr+ (mine is) and you are post-menopausal, which I'm not. Thanks if you can give me a site to go and read more. I don't want to leave out a step/test.
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My onc ordered it for me and I had one node with a micromet. In fact, when the results come back for the test, they include curve graphs with 1-3 nodes then >4 nodes. So they are obviously doing the tests for women with node involvement. Me being one.
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Barbara: Thanks, good to know. I'll ask about this at my next onc appointment.
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LadyinBama- If you call the Oncotype DX folks, they are most informative. They were actually better explaining things to me than my doctors. Like Barbara, I had one positve node and there was a special graph in my path report for node positive women. Their site is www.oncotypeDX.com their phone is 866-569-2080. For me it was really an important test to help me with decisions. Good luck!0
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Hi SharonNM - Welcome and sorry you have to be here. Here's hoping for clear margins, the waiting for results is awful and I hope all turns out great for you! Glad to hear you finished chemo already. I'm on CMF thru Nov. Do you have additional treatment plans? I'll be doing chemo, rads, then tamoxifen. Here's hoping they find a cure!!! All the best to you and let us know how things turn out.
As for oncotype results, they are now doing the test for 1-3 node positive people who are Er+, as I understand. My score was really low (6) so I was able to get a lighter chemo regimen. I highly recommend getting the test. If I would have had a higher score I would have opted for stronger chemo. This test showed that chemo would be of less benefit and hormonal therapy of much greater benefit for my particular cancer. Most insurance companies will pay for the test as I understand.
All best wishes to you 2010 Sisters!!! Much affection and hugs to you all!!
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I asked about the test and they said that because I was HER2+ it wasn't necessary because I would need chemotherapy and herceptin.
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from what you sistas are saying it looks like im gonna need chem with approx.10-12 nodes involved.thats all i know so far.I AM SOOOOOOOOOO AFRAID OF CHEMO.I DONT WANT IT.I WANT QUALITY NOT QUANTITY.I was looking forward to going to onc on wed now im really scared.i hate this damn cancer.and to think at age 69 i had about 3 mammos in my life.i felt the pain in my breast.
shit
k
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omaz - I'm so glad they have herceptin now. Hurray!!
grannydukes - Oh, you sound so upset and all I can say is get as many oncology opinions as you can. I got three oncology opinions before I felt comfortable with a treatment plan. It was a tough decision and I almost opted not to have the chemo. But, chemo is not the end of the world if you decide you're going to do it. There are sooooooooo many women who have gone through and are going through it. It's your decision in the end what you allow the doctors to give you. I totally understand quality and not quantity!!! Please let us know what your doctor says and what you decide to do. I am wishing all the best for you!!!!!
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