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Comments
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Rhonda glad this part is over--and glad tere is no real pain. I know it surprised me when I had them both taken off and no pain, my sister too--we were like why doesn't this hurt--did they do it rigt? Funny what bothers us and what doesn't.
It's snowing a little here but not much--everyone around is getting more snow than we are---I'm happy about hat.
BTW until all this happened I didn't even know the names of anti-biotics, now I'm on one most of the time for all different things and have to do double sometimes. So our immune system must be crap.
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Rhonda, I'm glad everything went well in spite of the delay. I just had the same procedure a couple of weeks ago, and I was surprised also by how little pain I was in. The worst pain was actually from the spot where the catheter for the port goes into the vein, and that's almost completely resolved now, too. On the other hand, half of my breast around the lumpectomy is still completely numb. Maybe it secretly hurts and I just don't know it...
Incidentally, since surgery I've started to call my left breast "booby al dente." Yes, I know al dente doesn't mean with dents, but that's what it sounds like, and it makes my husband laugh. Poor man could use a good laugh these days!
lago and LeeA, that's my favorite emoticon EVER!
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Re: post-surgical numbness
One of the strangest new sensations of the new normal (for me) has been getting into the shower, post-BMX, and feeling like I'm wearing something I should take off, i.e. a weird little miniature monkey vest or something. What I'm really feeling or rather, not feeling, is the sensation of numbness which, from what I understand, will never go away.
I've never had any pain whatsoever on the front where the stitches are located.
My husband, who wants* to be the wound dresser (since the infection), dabs on the saline solution and then the antibiotic cream and if I close my eyes I can't tell I'm even being touched.
*I would do it myself but I think this satisfies some earlier desire he had to be a general practitioner - or something.
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Thanks to everyone for all of the stories about chemo reactions... I was stunned by the whole thing. I don't want them to take my taxol away. I'm actually having minimal (at this point) side effects and I'm petrified of taxotere after my first chemo treatment...although I suspect it was the carboplatin that might have made me so sick.
My brother in law has chronic lymphocytic leukemia and has been being treated for 10 years. He doesn't have a port. He told me ports were really mainly for the toxic chemicals. He's been using the biologics (antibody) therapies for all of this time. So I guess it shows what the heck we are being tortured (and cured) by!
Special K, do you have the clinical trials.gov number or link for the vaccine trial? I'd like to contribute and wouldn't be surprised if Indiana University had a site.
Rhonda, I had no pain from the lumpectomy, SNB and port placement either. I just found I was uncomfortable sleeping without a bra for a few weeks. And the steri strips drove me bonkers! I'm glad your surgery went well. Fingers crossed on the path report!
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lago, how did you make it appear here? I want it! (And the suck it emoticon, too!)
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pbrain - here is the clinical trial link. They have locations for civilians in Washington, D.C. - Sibley (Johns Hopkins) Hawaii - University of Hawaii, Maryland - MedStar Baltimore, North Carolina - Wake Forest University, Texas - MD Anderson Houston & STOH San Antonio, Greece - Athens. For military personnel and their families - Maryland - Walter Reed, Texas - Army Med Centers in San Antonio & Fort Sam Houston, Washington - Madigan Army Med Center, Germany - Landstuhl Regional MEd Center.
I did the trial in Washington, D.C., and fluffqueen went from Indiana to Wake Forest to do it.
tonlee - I have a guest room in Florida with your name on it when you want to come down!
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Thanks for the link LAGO! there are some hilareous smileys there!
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Thank you Special K! Maybe they'd pay me to travel to Athens?
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pbrain - fluff and I joked it might be cheaper to rent a house in Greece and get a bunch of ladies and all do the trial together - that would have been nice, right?
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Linda, I completely missed your post earlier. Yes, I basically finished the entire round. I did 10 days of intravenous vancomycin and 10 days of oral Clindamycin. The BS had prescribed a bridge bottle of Clindamycin for the times when home nurses couldn't get an IV placed so I finished that bottle and enough of the 2nd bottle to make it a full 10 day course.
Re: probiotics - I've been taking Natren's Healthy Trinity and started it at some point during the vancomycin. I'm thinking I may have gotten a sore throat from the tube they stuck down (up?) my nose (after the port placement surgery I coughed up quite a bit of blood). Re: an infection - my temp was 96.6 last night.
I have another full bottle of probiotics so I'm going to continue taking them. I assume it's okay to take them during chemo.
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LeeA it's not uncommon to get a sore throat after they stick that tube down it.
Also antibiotics can give you yeast infections. After the BMX I almost made it through without one but the last day I got one. What I do is get acidophilus in capsule form. I remove the top part of the capsule (sometimes this isn't always necessary depending on the capsule) and put it up my vagina. I find the OTC meds actually irritate me. The only other option is a yogart duche but that's messy. My old gyno that retired taught me about that acidophilus trick.
Bryona I right clicked on the image and chose "view image" I then took the address and posted it like a picture. In skype you just need to t ype out what is in the right column with parentheses. Hope that makes sense. Below are the addresses that I stole. Be sure to include the "http://"
www.skype-emoticons.com/images/emoticon-00179-headbang.gif
www.skype-emoticons.com/images/emoticon-00183-swear.gif0 -
I had my port about a week & half ago. So far, the scar looks worse than it did when it first went in there. Is this something that will look better with time? I'm wondering if getting it out is harder because of scar tissue growing over it for a year, making it harder to get it out without making a bigger scar. Does this make sense? Any ideas? I'm really hoping in a few months it looks a lot better than it does now.
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lago, Thanks, that's a good trick to know (capsule/vagina/less messy)!
shore1, I wonder if the scar product that lago has mentioned would help with your port scar? I think it's called ScarAway.
re: images - I use imgur.com for photos from other sources. You don't need an account and it's very easy to use. http://imgur.com//
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shore - my PS has Kelocoat gel in his office. Also you can get the silicone strips to put over the scar at night to flatten it out as lago mentioned. A friend had wrist surgery with pins and screws early in the year and used them, they worked very well.
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Shore: Mine looked worse afterwards too and after 3 weeks, it was so bad I went back and was told that it would settle down and if not, they could go back in and do something or another and smooth it out but they urged me to give it time because that alien thing had been in there for a long time. They were right and a few weeks later it all started settling down and it is now barely noticable and it was removed mid August. Whew!
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Shore my port surgeon was so please with my old port scar that he went through the old scar to remove it. He did say he would have to make it a little longer. Really not to bad but I had a juvenile port. The removal can be tricky. I know he told me mine was pretty stuck in there. It's healing nicely now. It was my port surgeon that told me about the Silicone sheets. He had a sell sheet for a similar product but told me they sold something at Walgreens just like it and it's a lot cheaper… figured out it was Scaraway. 1.5 weeks is not a long time. I know my old port scar took some time to look better. Now that I'm using Scaraway it flattened out very quickly.
But my port surgeon said if it didn't look right he could go back and fix the scar.
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LeeA, the probiotics are ok during chemo – I took them the whole time and I think it helped with a lot of GI stuff.
Iago, those are hilarious, but the one you used is the best! Sadly I don’t get a lot of the references. Heidy? Fubar? Toivo? I guess I am not very hip.
Rhonda, glad you’re not experiencing too much discomfort – fingers crossed for the path report. Re the cold caps, what are the pros and cons that are really on your mind? It’s true that with the cold caps you can’t fiddle with your hair for quite awhile. On the other hand, it’s really nice not to have to deal with a wig or head covering every time you leave the house. And remember you’ll have to deal with that for quite awhile PFC unless you do the caps. Do you wear your hair long or short? I get the feeling that those of us with long hair are more inclined to use the caps, because the time period for it to grow back is so much longer.
Pbrain, ugh. How many more tx before you're done? Oh and i agree with Bryonna (I think it was Bryonna?) -- you are not a wimp and all your witty comments through all this prove that!
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Fubar = F*cked up beyond all reason
Heidi the squirrel = female genitaliaToivo= toilet brushWas that TMI? When in doubt check out the Urban Dictionary
During chemo I was doing probiotic and Metamucil! I've been doing probiotic for year because of IBS. I had big C issues and the Metamucil (+probiotic + dried apricots + high fiber food) was the only thing that got me through the 4 days after treatment.
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On the port subject, just thought I'd say that the walking around, bending over, swinging arms trick worked for me yesterday when they could not draw blood from my port at first. I found it interesting (disturbing?) that the nurse didn't even suggest that, but said she could just draw it from my hand. I asked her if I could try it, and she said, "If you want to . . ." like I was nuts. I was quite excited when the blood started to flow; she was rather unimpressed.
So anyway, thanks to those who have posted on the subject.
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One time a nurse ace me a glass of water and in no time the blood came running. LOL
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Rhonda - my BS told me he injects a heavy duty steriod in to the MX area at the time of surgery, it lasts about a week, by then the worst of the pain is over - hardly had any pain after MX, my port hurt worse, and it wasn't too bad.
shore1 - my port scar is about an inch long and barely visible. My BS took it out in the office with a local anesthetic, it had been in over a year and had definitely grown over with lots of scar tissue, etc... It actually took him about an hour to dig it out (thanks to Ativan and LOTS of local meds I didn't mind). I thought it was going to look much worse than it did before, but really I can hardly see it now. It runs just under my clavicle and kind of hides in the shadow there.
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Goodness Linda. I was so lucky, my port was in 16 months and also came out in the office with a local. I was so nervous that I took half a xanax before I went and it was so easy. It was over in less than 10 minutes. He whipped that puppy out and proceeded to show it to me...like I cared.
I'm preparing now for my colonoscopy on New Year's Eve. Started the SennaKot this evening and tomorrow all the other 'stuff'....looks awful!
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Good luck with the colonoscopy Arlene - I guess I should really get one this year!
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Good luck Arlene! I am in the same boat as you Linda, I turn 50 on Jan 8 and my onc told me I should get a colonoscopy at 50. But I don't want to!
My port was taken out in the surgicenter by an invasive radiologist. It probably took about an hour. He told me they sometimes become kind of encased in a protective cocoon and pop right out, and sometimes the scar tissue grows over them and they have to dig them out. Mine was the latter, wish I'd had some kind of anesthesia or taken Ativan or something, but all I had was lidocaine. There was no pain, just didn't like the feel of all the pulling and tugging trying to get it out. He told me if I was unhappy with the scar, I could see a plastic surgeon about it. It isn't raised at all, but it is a dark, red line, much more visible than my surgery scar from flap surgery which the PS did. Wonder if that cream would lighten it? I've had it out 5 months ago, don't think it will get any better on its own.
Thanks for the encouragement on the vaccine trial. I didn't think of it as a way of paving the way for maybe some really good new tx similar to the women who trailed herceptin. Thanks for putting it that way SpecialK, that makes me feel really good about doing it.0 -
Kay & Arlene.. I had my first colonoscopy last year at age 73. I was really scared,but it was not that bad. The worst part was the prep. Good luck ladies..
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arlene - good luck with the colonoscopy - hope it is easy for you.
kayb - I love pasta but don't really care about bread or cereal, etc. so this was not hard for me, but I did follow a "detox" type diet for 30 days first - no alcohol, no dairy, no grains, no high-sugar fruit, no caffeine, no starchy veggies, no pork, nothing frozen or canned or from a box. Eveyrthing should be organic, grass-fed, free-range, or pasture raised and in its whole or pure form. I ate apples and strawberries (high-fiber fruits), lean beef, fish and chicken, eggs, vegetables and salads, water with lemon, cooked with olive oil. I know this sounds extreme but I did not find it difficult - just boring sometimes. Aside from lessening the joint pain I lost 10 lbs. and it has not come back, even though I have been less well behaved lately. This is very similar to the initial phase of the South Beach Diet, so if you need a guide I would use that book but potentially add in the other phases, just not the grains. This is also similar to the Candida diet which seeks to control yeast - which is thought to potentially to be a problem with cancer. Here is a link to that info:
http://altmedicine.about.com/od/popularhealthdiets/a/candida_foods1.htm
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I finished chemo 2 weeks before my 50th birthday. That spring I got my initiation (colonoscopy). No issues and even though my maternal grandmother died of colon cancer and both my mom & dad have had polyps removed (on the 5 year plan) I don't have to go back for another 10 years. That toxic waste they make you drink sucks but I heard it used to be worse. I'm hoping in 10 years they will make more improvements.
My port surgeon commented that his scar from the port insertion was better that my MX scars under my arm. Wouldn't dare tell my PS but he is right. My port surgeon uses surgical glue. That might be the difference. Don't think you can use that on a large MX scar.
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Thanks for all the suggestions on port scar. I'll look for the scar away and hope time helps too.
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Thanks for the info on the colonoscopy. I am resigned to doing it once I get through the six months of the vaccine trial, so some time this summer. I have an aunt who died at 60 from colon cancer, so I will do it.
It is funny how different everything turns out for us. They used surgical glue for my port removal. I must say it was dark red the whole time I had it, so I don't think the removal had anything to do with it. I had a complete ALND, and after the surgery I didn't even know they cut under my arm. I was looking for something, didn't see anything and asked my DH if they pulled the lymph nodes out through the mastectomy cut. He said I guess so. Over a year after the surgery, something was bothering me under my arm,and it wash stitch sticking out. Then I found the scar. I could barely see it. I am not sure if that was the PS work or the BS. The scars around where the nipple was removed and the other mx scars are sure visible though. They're not dark, just kind of ugly. I think lymphedema swelling makes it look worse.
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