TRIPLE POSITIVE GROUP
Comments
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One of the reasons weekly Taxol is not given more often is it is more costly in terms of time & $$ for the onc and the chemo room. Can't see as many patients if chemo chairs are all in use by repeat patients.
I would also be careful of taking mega doses of Acetyl-L-Carntine. I did take it but not mega dose and it did help with my neuropathy (initially had tingling in my fingers but stopped after taking it. Still got it (still have it) in my left heel. One study showed that mega dose can actually make it worse but there are still studies going on if you want to join a clinical trial.
You might also find this interesting: linky
steiner18 get on that heartburn right away. Call your onc. I had terrible heartburn. By my 5th TX I was on 2 meds (non over the counter stuff because prilosuc never works one me).
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Ashla,
lol..so right! I am in the "get this out of me asap" group of women when it comes to ports. Was so thankful my Onc agreed because I was preparing for the fight.
It's so much nicer when we come to an accord!
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Lago, thanks for the heartburn advice. I'm doing better right now. Took some Zantac 150 last night which helped immensely. And skipped my morning coffee (boo
) today to ward it off. Hopefully I don't get a caffeine withdrawal headache lol! 0 -
Seriously....
Your post should be repeated regularly to remind us just what is at stake here when we get cowed by this disease, the system and our providers.
If we don't advocate for ourselves, who will? Even well meaning family cannot do it because they're not in our heads and bodies.0 -
I went to a forum on breast reconstruction last night that was fascinating. I wish I had taken notes because it was loaded with good info. That's what chemo brain has done. Before chemo..I would have had pages of notes.
There was a tattoo artist in attendance. She does 3 D nipple tattoos . Amazing. $1,000 bucks for one but she does the good boob to match. The doctor said it's difficult for them to get the same results because they can't use the same dyes.0 -
Steiner18 I was having the same problem with the heartburn on my first treatment 4 weeks ago. Before my second treatment my doctor recommended to start taking renatidine 2 times a day a few days prior to my second treatment and continue on for a few days after. I did that last week and it worked. I was also chewing on ice during the infusion of Taxotere.
For you who had Taxotere I have a question about hair again. My hair is gone now. I only have 5% of it left and did not shave it. I heard yesterday from a close friend who was on Taxotere 1.5 years ago that her hair is not growing back properly. She is still wearing a hat and she has bald spots. I got very alarmed and concerned.
Just wanted to know if you have any tricks for us while we are on chemo to prepare out hair growth? Any oils that we can use? I am hesitant in shaving my head? On my first chemo 2.5 years ago I did shave my hair but I was on Taxol and you can see from the picture how nice it grew back. I look now like a 100 years old lady who is going bald.
Thanks
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dimidani - Taxotere does have the unfortunate potential of permanent hair loss, but it does not happen often. My hair came back in slowly but I have complete coverage. I started taking Biotin 3 weeks after the last chemo and my hairdresser, who has had a number of clients who have lost their hair during chemo, had me start using Bosley shampoo/conditioner/leave-in/serum once my hair started growing back. I am still using the Bosley products but have switched from the one in the blue bottle to the one for color-treated hair. I shaved my head but not down to the skin, I left it about a half inch long. Eventually that hair was cut off by my hairdresser because it represented hair that was damaged by chemo. She also said my hair would need to be cut more than I was comfortable with at the beginning, but she was right. I am 22 months PFC and my hair is down to my shoulders.
For those taking Acetyl-L-Carnitine, I believe that tonlee posted a while back that the body could not absorb more than 500 (mg or mcg - don't remember) at a time so taking more than that was wasting $, I did take it combined with 30g of powdered L-Glutamine and a B-6 cap during chemo. I had finger tingling that always resolved prior to the next tx, bottoms of feet stayed tingly for about 60 days PFC. I have no neuropathy now at all.
I returned last night from my final vaccine trial visit to D.C. - yay! I was getting tired of flying and the airport every 3 weeks. I don't have to go back until next June. So, fluff and I are graduates! It makes me happy to have met another BCO lady who was already starting the trial there, and because I had chatted with another one - she is a candidate as well.
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Welcome home SpecialK- I'm copying and pasting about the hair stuff, because I will forget. :-/
I wanted to ask, today is day 14 post chemo #3. I got up at 6am to use bathroom and got about 4-5 steps and whoosh! Mad crazy dizzy, felt like it was pulling me down. I made it back to bed, laid down, sat up on edge again, and still dizzy, so laid down and called for help. With my DM help, trying again, it subsided and made it to bathroom. ??? Last night I did take an Ativan to help sleep and because feeling a little nauseous.......which I attributed to nerves and thinking about this next stinkin chemo treatment. But even today, my stomach is a little off. Just a hint of nausea. No indigestion or reflux. ???0 -
tonlee great post and couldn't agree with you more. I raised hell many times during my treatment, which is so much harder to do here in canada due to public healthcare. I went to see head of breast oncology one day because i was so frustrated with the lack of communication from my MO (who is not my MO anymore). They deal with hundreds of patients and the've seen it all before and i am just another case to them. But not to me and not to my family. I think the issue is that a lot of patients want to be told what to do, don't want a lot of details on their cancer/treatment and trust their doctors implicitly. I remember my BS telling me that i ask questions he wishes his residents would ask! I think you should definitely start a new thread for all the newbies starting treatment
dimdani unfortunately that can be a SE of taxotere but it is rare - i have all my hair back now as thick or thicker then before. I grows much more slowly then it did but i am going to blame H for that (no scientific evidence on that one)
ashla they don't do nipple sparring procedure here...wish they did because i think thats the toughest part of looking at myself right now. Both my BS feel that leaving the nipple behind leaves too many ducts that could become cancerous. Not sure if they would still have to screen you after? curious about that - SK i think you had the NPM? do you still get screened or is that it?
my nurse said she does the tatoos -huh? didn't realize she qualified as a tatoo artist!!!!!
did you guys read the thread on SABC about tamox for 10yrs having a slight advantage over 5yrs?
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dimidani - yes, unfortunately about 3% of people suffer permanent hair loss on Taxotere. So, the incidence as SpecialK said is quite low. Even though I did cold caps, I did have some shedding/thinning, so I started taking biotin after chemo to help strengthen my hair. I really feel it helped. My nails became noticeably stronger, too.
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rozem - I have a NSM on one side. They insist on mammo's and MRI's - mostly because I had close margins on my non-NSM side, but I think also b/c of the NSM.
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Rozem...
This plastic surgeon...a world renowned expert on the subject ...said the incidence of cancer in the nipple is very, very low....if I remember correctly 1%...they don't know why . They do pathology on it too.
His patients are back to normal activity....no pec work tho..within 3 weeks. He wants them in full range of motion in a week. Amazing.
I'm thinking about it. My radiated boob makes the incidence of complications more likely tho.0 -
rozem - I had a skin/nip sparing BMX but they core out under the nipple and do pathology on that tissue, so the nips are really just a decoration - they don't do anything interesting, lol! You have to be a candidate for that surgery, in that the cancer has to be well away from the NAC. I was originally supposed to have a lumpectomy, and that was what the BS was planning, but I elected the BMX and then he proposed the NSM. He showed me a power point presentation (which is available online) and I was amazed with the results. BMX turned out to be a wise choice because I had surprise positive nodes and ADH/ALH in the "prophy" breast, so I am very happy I did it. I have not had any breast specific screening, can't do a mammo because I have nothing to mammo, can't do a MRI because I still have a port, I have had two PET scans - one pre-chemo and one post-chemo. I was supposed to have a post-Herceptin one but I needed to have it pre-exchange and they could not get the authorization done in time, so it is now scheduled for Monday. This is the first one I am actually nervous about because if something was going to be there it probably would be by now.
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Special K..
Congrats on finishing the trial and thanks or your courage and sacrifice. That was a tough haul after years of tough hauls!0 -
ashla - thanks! It was easy for me - not too many SE from the injections, helping ladies who will come after me just like the ones who helped bring Herceptin to the market, plus potential benefit for me personally, and I got to see my DS and lots of friends - totally worth it! Gotta say - I am over the airport, my LE arm hurts today, I must learn to pack lighter!
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sk congrats on being done w the trial. I think that is amazing. I finally got the courage to watch "living proof" (couldnt do it last yr) and am so grateful for all those women who did the initial trails for H. I really got a new appreciation for what herceptin has done for us ladies. I am feeling guilty about dropping out of the metformin trial...i think i will go back on. Thanks for the info on NSM - i feel i would have been a candidate but they dont do them here. A PET after H? my onc does nothing after treatment is done
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rozem - my MO center has their own PET scanner so if insurance will cover it they are a bit scan-happy! He also likes to do quarterly CA 27/29 and CEA so he is a MO who likes this kind of trending info. I like it (at least so far) because the scans have always been clear and the markers have indicated normal levels. I am aware that both of these things can show false negatives, so I also take the results with a grain of salt.
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specialK - I had an MRI with my port in...no problems...I just have a regular port - maybe that's why? Dunno, just caught my attention.
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Nipple tattoo done, yeah!!
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dance - well, maybe I can have an MRI, I was assuming. None of my docs has ever requested one post-BMX (I had a pre-surgery one) probably because the PET was already being ordered. Interestingly, they have added a small screen to the airport scanners where you hold your arms over your head - the port showed up! It confused the TSA peeps! Had to explain it and then I got the sad face
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dimidani - as the others said, biotin is great to take. Also I used the Nioxin products - scalp treatment, shampoo etc - I really liked them. Do a search on BCO for Nioxin and lots of posts should come up.
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You ladies are gonna bash me for this, but I am finally at a computer that has some picures on it and I can't figure out how to post my picture to my avatar!! I click "choose" and then I choose the pic off my computer, and then click save, but it doesn't work. I have an apple, if that makes a difference. Sorry for the detour from the discussions.
I hear there will be more exciting annoucements from the SABC tomorrow.
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Can't help you with the pic Nicky....
On he news out of SABC.....I think it's Neuvax... I think our Fluff and Special K made history!0 -
Nice quote someone put on FB..
" Life begins at the end of your comfort zone"....0 -
Dechi!
Congrats on the tat! Are you done now with reconstruction?
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SpecialK - thanks so much for participating in the vaccine trial! I was just reading the link to the trial.
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Nicky, maybe it has something to do with the picture size or file type? .jpeg vs .gif? I have about 50% luck when getting an avatar pic to upload to this site. I wish it were easier to share pics in our comments too.
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1. I didn't get the PICC line
2. I have to have the tissue expander removed and debrided and replaced tomorrow morning
3. Last night's home infusion went really smooth with a different nurse who works in our local hospital during the day.
4. The fun, it never ends!
ETA: Steiner, I love the haircut!
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LeeA, oh no!! :-( Good grief, I'm so sorry you have to get the TE re-done. Is that outpatient? I'm glad your antibiotic infusion went better last night than the first time. That first guy sounded like it was his first time or something....scary!
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ashla, I love the quote from Facebook!
dechi, great news on the tattoo... it's good to hear there's light at the end of this tunnel - and that it's not the headlights of a train but the glow of a tattoo.
SpecialK and susieq - I took screenshots of your posts re: biotin, etc. earlier today when I was reading them from my ipad at the hospital. I also noticed a Cold Caps cooler in the infusion room today that I hadn't noticed before...thanks for the info!
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