Calling all TNs
Comments
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Luah - Galapagos! I'm so jealous!! I think it is just wonderful that you are planning your dream trip
.inmate - I will keep you in my thoughts. I don't have any experience with that, although I do with cancer continuing to spread during chemo. It sucks, that's for sure.
TifJ - I'm so sorry to hear about your doctor. This disease - cancer in general - is just horrible
.Fighter - I don't know the normal range for tumor markers, but it *can* signal the start of a relapse. They aren't reliable for everyone however, so many doctors don't use them. I do know yours was darn good - 11!
bkj - I PM'd you. I will say that if your oncologist wants to add in Avastin, he needs to act now. The FDA will likely be removing it from the approved list, as early as July 29th, and insurance won't pay for it off-label at $8k a dose
. My insurance has approved 4 doses, but I will probably only get two in before the decision comes down...and then I'm sure they'll yank approval. Riley - your kitty sounds adorable!! Pictures!!!
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Hi, my tumor went from 4.5 cm to 1.1 cm with the chemo. My clinical trial was 8 rounds total (Avastin every time). Besides the Avastin, the first 4 rounds were Taxotere and Xeloda, and the last 4 rounds were with Adriamycin and Cytoxin. Then I had BMX and rads. The rads were optional, as the RO said I was on the borderline as to whether they would be definitely helpful or not, so I did them. I haven't had reconstruction, and it's nice and cool to just throw on a tank top or cami and go.
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Tifj: So sorry to hear about your doc. I know how that can shake you up. My own dear, dear GP went from diagnosis (stomach cancer) to death in a matter of weeks, just at the time I was diagnosed with BC. I truly miss him - although I am grateful to have been taken on as a patient by one of his friends and colleagues.
Inmate: MRIs are notorious for showing up everything, they do invite a lot of follow-up. Fingers crossed it's nothing at all.
rily: congrats on the new furry addition.
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CA27-29 tumor markers are supposed to worry the doctors if they get over 38. BUT that is so not reliable. When I was 1st dx'd, mine was 19. It dropped to 14 after 3 chemo treatments and the BMX, and then has been 10 in December, March and June, so I think I have MY normal range. Someone else on the site has 'bouncing' markers...15, 25, 15, 25. There isn't much else they can do to screen unless we have something specific bothering us for more than 2 weeks.
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Sorry Tif about your Dr. I know it has to be upsetting. I don't know what I'd do if something happened to my Dr. It makes me think I'd better get back in touch with my surgeon to do another colonoscopy...soon! I've been putting it off. I just wanted to get through one summer without having to go to the hospital for anything.
Sorry bkj...I have not taken avastin or zometa. I had just assumed I couldn't take anything that would work after inital treatment...and have not thought much about it until recently. Now I wish I'd been paying closer attention to my body aches and pains and had of discussed them with my Dr.
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I never had any other chemo or trial but the AC and T..I hear of you guys doing this and I wonder..should I have done this..I remember asking but nothing ever came of it. I have never had any scans, no tumor markers, no blood work..nothing at all...just every 3 month visit to the onc...sometimes I wonder if I should have more..the other times I think why borrow trouble....
Tiff..so sorry about your onc..that just sucks..you think that your doctors are invincible and stuff like that wouldn't happen to them...Weird..two of the ob/gyn's in my town wives' have had breast cancer...One is alive..the other one is not...
Have I said lately that cancer sucks?
Riley..love it that you got a new kitten....I have 2 cats myself...one is a little boy and one is an "old girl"...I love them both. My little guy found us when I was going through chemo...I'm kinda one of those people that believe that maybe he was sent to me....
Reading about some of you having colonscopies..I need to have one done also..I'm waiting until after my daughter's wedding..I KNOW that is being a chicken but I just can't bear the thought of them finding something and screwing up this wedding..I just can't let it happen
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Titan- you have never had a scan? I'm wondering why? Please dont tell me it's an insurance issue because I might lose my mind!!!! I would be demanding a PET scan! But that's just me.....my motto is: if it's a lump, bump or hurts for more than two weeks they are gonna scan something haha! I'm crazy like that
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CANCER SUCKS. There I said it,too.
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I'm joining in the cancer sucks club. I feel like crap today (and yesterday). I basically can't do anything except take my dog out to do her business (and even that is a struggle). Ugh...so tired of all of this!
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Someone asked about CA 27-29 markers...I just had that done last week (was 3 wks PFC at the time). Did some research since I didn't know what it meant. This is from Dr. Susan Love Foundation. I will ask my onc why he uses it. I know that it depends on what lab you use what numbers are considered normal. Some say anything under 40 is normal (my lab); others say anything under 50.
By the way, new RO is great. I have much more confidence in him, even though will have to drive 90 miles. I am so relieved and will start treatment next Wed. First RO said (first words out of his mouth), "You're too young to have triple negative. This is bad. Really bad." Nice way to start a conversation about rads. When I mentioned to new RO, he said, "Chemo took care of triple negative. Rads is localized. Nothing to do with negative or positive. I don't know why anyone would say that." So after crying for almost a week, things are a little better.
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Blondelawyer So sorry you are feeling low. I am in Seattle as well. Let me know if you would like to meet for coffee?0
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Hi all, joining this thread. Just back from onco. triple -ve. setting in the port on 8 jul as he wants breast surgeon to give the greenlight on my recovery from surgery first. Seeing Breast surgeon on 5 Jul, dentist on 6 July. Taxotere and Cyclophosphamide every 2 weeks, 6 cycles staring 11 July. Step by step moment by moment
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hi everyone had line put in arm yesterday. did anyone still work with theses things in. would appreciate some advice.
thanks
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Titan, my first go around of stage 2b triple neg dignosed 12/02 I only had a chest xray and bone scan prior to treatment. After that nothing other than general blood workup, no tumor markers or scans. My new primary was found by mammogram, which I think it was missed a year ago because of dense breast and almost missed this time. This time around it is a later stage and a different doctor and I have had almost every scan possible! I think the difference is my docs way of doing things plus the later stage. I have to admit, the first time around I was grateful for no scans, as they make me a nervous wreck! But now I know I need them, so I have to deal with it! You caught yours so early it doesn't surprise me that they don't do followup scans. If you are worried maybe you can ask for a yearly one just to make you feel better.
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blondelawyer, are you doing 4 or 6 ac? I am on number 5. I am trying to keep positive that it won't be as bad as number 4! It was rough last round. My fingers hurt so bad I could barely do buttons, or squeeze toothpaste, hard to type and pick up things. Finally went away day before next treament. Nails are not looking good! Doc gave me a suggestion of L-carnitine, but which one? there seems to be two types. one is aacetyl l carnitinel.
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Ladies, it is me, Lovelyface. I haven't been here a very long time.......I have missed you all. My son finally did get married on June 18th. My God, it was a very hectic time for me. A total of 4 huge events. The reception had 400 people....... Indian weddings are like this. Anyway, it all seemed like a divine hand was doing everything. I still cannot believe we pulled this wedding off.
While all this has been happening I started having really really bad neuropathy in my right hand. I could hardly type. Doctor told me to stop aridimex which i had been taking for 2 months. But even though I stopped aridimex on May 25, a month later, stilll neuropathy. Well, doctor came in the room with a very sombre face last Friday June 24. He then told me that sometimes when women start having pain, it is indicative of cancer reaching the bones. Oh my God, he wrote a petscan for me. first he said I should go and check with the Orthopedist and see what he says. Orthopedist said it is not carpel tunnel. And also it is not due to a huge fall I had taken on May 21st. My leg had spread sideways very far apart...... but he said that did not have an effect on my arms.
Ladies, I am freaking out. I had also had Zometa as part of my hormone therapy in Feb. I am 5% progesterone positive, therefore, doctor had given me zometa/aridimex for 5 years, but I have stopped aridimex for a month now. i don't think it is the side effects of aridimex, although it is still possible.
Anyway, does anyone have any info. on bone metasteses? I am so scared. I hope the doctor did not mention this to me..... I might do the petscan next week when it gets approved.
MBJ - I have been reading your posts on low body temperature, very interesting!
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I had scans right after my diagnosis and before surgery - presumably to see if the cancer had spread. But since my surgery, AC and T, and rads, no scans. IF I had bothersome symptoms for 2 weeks, I'd see my onc and she would order scans I'm sure. As I understand it, onco clinical guidelines call for visits every 3 or 4 months, regular clinical breast exams, and annual mammos. Anything more is at the discretion of the onc (and in the U.S., the insurance carrier I guess).
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bkj66: I'm not sure if we are doing 4 or 6--oncologist wants to see the response. I'm not sure if I should wish for 4 or 6. I am so anxious about surgery and meeting with the surgeon again. I have decided that a BMX is right for me (I've posted about this before), but for some reason I am terrified about having this discussion with the surgeon. I have no evidence to base this on at all--I think that I am just scared to have the discussion and scared to have all of that weight on my shoulders. I think that it probably has more to do with not having my husband here than anything else. I suppose I just want to have him as my advocate for this--if that makes any sense.
When do you see the oncologist and surgeon again?
I am going to try to get a couple of errands done today--hoping I survive and don't feel as horrible as the past two days! Wish me luck!
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Luah, thanks for the information. Yes, my pain came just right almost the same time around my 3 month visit with the Onc. My one year anniversary since diagnosis is in July, next month. My 6 month MRI and mammo followup is also in July. And my last Petscan (the only one) was last Oct. 10 months ago. I was not supposed to get a petscan, exept for this strange pain. I never thought of cancer at all, I just thought that maybe this was a side effect of aridimex, or as some other girls told me they felt huge neuropathy 5 months after chemo, maybe due to taxol. May was exactly 5 months after chemo for me, so maybe this is that same neuropathy they felt. I just wish doctors would know this pattern and not scare their patients like this. While waiting for the petscan to get approved, I am freaking out, so scared. Now I can feel a slight pain in my spine, my arm bones, maybe I am just imagining.
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Bkj66 - I read that keeping your nails painted a dark color can help keep your nails from cracking and lifting, it has something to do with the way the chemicals react with the sunlight and the dark polish helps prevent exposure. I'm very lucky my BF comes down once a month for the weekend to clean my house and do a mani/pedi. She's a manicurist and this time she did my nails black with a silver shatter over top, I'm a bit old for it but think it's pretty cool and since I've got no hair I feel a bit more punk. I'm doing six rounds of TAC and am very afraid of neuropathy, I've been taking B6 and L-glutimine, but only had my second treatment yesterday, you are so far ahead of me.
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Ladies, I am sorry, I barged into your conversations..... I am so self absorbed today.
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Lovleyface, join in anytime! It is not barging in! I know waiting for scans can be terrifying, just imagine how good yo will feel when you get good news! (I kknow, easier said than done, as we all tend to go to dark places)
Blondelawyer, just saw onc at hospital for a real quick visit, not much discussion, my next appointment is in a week, so I usually see him 3 times in a 2 week period. Next visit I hope to get to talk to him more. He is always so busy and has good ideas, but lacks the time to explain it all to me, I always feel like I leave with more questions. Im worried that because he is older he is a bit scattered and he is incredibly busy. Sometimes I think I would like to switch hto Dr. Rinn, I met her once and really liked her. I should book an appointment with my surgeon to see what he is thinking. According to onc, I need to do the abraxane/carbo before surgery, but my thoughts are kinda doing it after, if my breast tumor is completely gone, then the next chemo can finish cleaning up the nodes and then off to rads. Will you do more chemo after surgery or do you know? I think that with the size and aggressiveness of you tumor that you surgeon will be on board with your decison. My surgeon said bmx right off, but my tumor is deep in the breast, close to chest wall and the brca positive thing makes it a pretty straight forward decesion for me, as long as my cancer does not progress. I do hear of many stage 4 ladies getting bmx so even if I am not quite stage 4 I would still like the surgery, although part of my mind goes to the, oh, how nice, no surgery no reconstruction, that would be great, then I think, what if I have a local recurrence that spreads worse. There is so much to think about and so many choices. Good luck with errands! Sometimes it feels so good to get out even if not feeling great.
mcrimmon, I will also try the polish, is the remover kinda drying on the nails though? Do you leave the polish off for a couple days to let your nails breath a bit? I just know my nails get sensitive if I wear polish for long periods of times. Thanks for the suggestion!
Edited to correct a statement!(:
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Lovely Face! Good to hear from you..sounds like the wedding was awesome..so happy for you..I hope you like your new daughter in law!
I also hope that your scan will come out with only arthrititis or something like that!
You certainly aren't barging in the conversations...we all talk about a million things at once...it's fun!
I don't think that I will ask for a scan unless I'm feeling a pain (two week rule)...Right now..for now..I'm feeling pretty dang good...I think that it is a good rule.
If they scheduled a scan for me I would down a whole bottle of Ativan..I just know it.
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Bkj66 - I probably will remove this polish in a couple of weeks and repaint myself until my friend comes back to do it again, my nails do get discolored when I keep them polished all the time but I am keeping them short (another suggestion I read) and would prefer discolored over the lifting, that sort of scares me a bit. Just curious, why do they not recommend BMX for stage V?
Lovelyface, I'm praying your scans are clean and it's arthitis like Titan says.
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There are differnt thoughts on bmx for stage 4, think it depends on each situation and how stable the disease is. There is also the time off treatment needed for surgery, so that is why I think it is a no brainer for me to get the surgery if my nodes are cancer free, but I guess you cant really know unless you take them out and they are inoperable (controversy on that also)
The lifting of nails terrifies me! It sounds painful, so I will try polish. I have kept mine very short also and that certainly helps them not getting caugt or bumping into anything.
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bkj66: I'm sorry that you feel so rushed with your oncologist. Mine is on the older side too, but I have NEVER felt rushed with him before. He is really attentive and always ready to answer all of my questions, etc. I'm really happy with him. I hope that the breast surgeon is on board with the BMX, I feel like I have done the necessary soul searching and research and just don't want to have to fight with anyone, if that makes sense. I believe that the reason that lumpectomy was even on the table was because the tumor is confined to one quadrant of the breast. But it just is too aggressive for my tastes, plus my age, etc.!
I am not sure about chemo after surgery. My onco and I talked about it briefly and it was another one of the "it depends" on how things go, discussion. I think that the uncertainty is part of the difficulty for me.
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Sorry there are too many posts to reply to and I can't seem to keep it all in my head!
Titan: I agree, early stage, you are running and being healthy and feeling great-don't think you would be feeling so hot if something was wrong.
Lovelyface: I was just wondering how you were doing the other day! So nice to hear from you. My Onc just writes off my neuropathy--He told me this: Anywhere you have had an injury, chemo will make it worse. Most other neuropathy tends to come on both sides of the body. So both of my thumbs don't work-just neuropathy; plantair fascitis in right foot-car crash enhanced neuropathy; right hip pain-car crash enhanced neuropathy. So I don't think I have cancer I think I just have lots of body injuries that were made worse by chemo. Hope this is all it is for you! Hugs!!
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For the dark nail polish thing: My onc wanted to see the condition of my nails while on chemo so he didn't want me to put a dark colour one. Instead, I found a clear nail strenghtener/nail repair treatment and my nails did ok. The Taxol was harder on my nails then the AC. I only lost one toe nail after all the treatments ended.
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Did you Seattle ladies know there is a Seattle area group that gets together every now and then? It's called Crazy Sexy Seattle something or other.
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Crazy Sexy Cancer in Seattle is the name of the thread.
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