TRIPLE POSITIVE GROUP
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Merry Christmas, Hanukah, and holiday cheer to all. You guys will never know what you've done for me this year and late last year! Happy birthday Rozem, and do stick around because what we have all been through and are going through can help others so much. I'm gonna be posting at 89!
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McKatherine - no advice on the cysts other than to say that I had these too for many years and they were pretty much just a nuisance, but had a large lemon-sized one that ruptured - it was quite painful. I finally had a complete hyst/ooph at 45 for uterine fibroids that had become symptomatic, so that solved the problem!
Happy holidays to one and all!
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I hope you ladies don't tire of it... my favorite meditation...
"May we dwell in the heart,
May we be free from suffering,
May we be healed wherever healing is called for,
May we be at peace."
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Asla who can tire of that..it's beautiful--and it's a god feeling. May all find peace in their hert and less pain in their bodies. (As I gobble up my pain pills)
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Ashla,
No way will we get tired of that.
Camille,
Amen to that!
Nicky
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Nicky J and Camille and all else who are in pain... I hope you find the relief you seek!
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Pbrain,
Glad you are using the Latisse. I used it throughout my chemo. I never lost my eyelashes or brows. Brows got a bit thin, but they are nice and thick again. Lashes are thick and very dark. My friends cannot believe how good they look. My onc was so surprised. Every 3 weeks he would ask about them. I finished chemo 7/11/13. My hair is coming along nicely. Very thick and curly, just like pre-chemo. Waiting patiently for bangs. I will upload a pic this week when I get caught up. Love this site !!!
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I'm triple positive and probably starting chemo in a couple weeks. Has anyone done CMF + Herceptin? (Cyclophosphamide/methotrexate/fluorouracil) It's less aggressive chemo.
Anyone? I'd love to know how you felt on it. I know everyone's different, though.
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Last herceptin today! Yay!
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liz17: congrats on finishing herceptin. That is a huge marker in your recovery. I have a MUGA next week and Herceptin scheduled next Thursday; I will definitely be glad even I'm done too! Will you be getting your port out soon?
ChickaD: I LOVE the dancing gingerbread!! Way too cute.
Ashla: meditation is always welcome; anything positive is a plus in my book.
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They said port would probably come out in January but that was just the nurse. Didn't see my MO today. My surgeon said the next time I see him the port would be coming out which is Jan. 28th. I see my MO again on Jan. 16, hopefully he agrees. I'm cautiously optimistic tho as I've read some on these threads keep them for quite a while.
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LizA17 my onc prefers we keep in them in for a total of 2 years because that's the most risky time for recurrence. She told me she can't make me but would prefer. I kept mine in for the 2 years. Also my treatment center won't put the port back in the same place because there is an increase in blood clots if you do.
But it seems most women get them out.
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Thanks Lago. Like I said, my onc hasn't said anything yet. I can see where they would opt to leave them in a while. I will do what he recommends, that's for sure. I would rather keep it two years than to go through having it put back in.
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We really need a like button here. Hope everyone had a wonderful Christmas (and/or holiday). Happy New Year!
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Arlene,
You're right! A like button would be great!
I hope everyone's enjoying the holidays
Nicky
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There is a like button… OK it's an emoticon but still works:
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Hi-I am new here. Just diagnosed in November-Triple Positive. Have a total of four tumors between the two breasts. They took me straight to chemo as first treatment. Started last Friday. Doing Perjetta, hercepitin, taxotere and carboplatin. Had a rough week. Lots of stomach issues form the perjeta-have lost 10 pounds in one week. Face is severely broken out from the carboplatin-using neutrogena acne cream but it is not helping much. Gums sore and bleed when i brush-food all taste like pepper, burnt yucky taste in mouth. Feel my best during the day, feel pretty good today. Hoping things ease off soon, trying to adjust.
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Vettegirl,
So sorry to hear your diagnosis. Welcome to the club no one wants to join, but you've come to a great place to find a lot of info and support. I just finished Dec. 2 the same treatment regimen. I only started perjeta at treatment #4 because it had just been approved by the FDA. I had the same experience with perjeta making everything taste like pepper, but it would get better a week after treatment.
I actually gained weight because the only things that did taste good were milkshakes and French fries + the fatigue made me so sedentary.
I didn't get a rash from the chemo, but once started perjeta I got an itchy breakout on my back. Are you taking a steroid before, during, and after treatment to prevent allergic reactions?
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I also had a problem with thrush once I started perjeta, which may be the reason you have a yucky taste in your mouth. If your tongue is a milky white color, instead of pink, you may have it. I had to get an antifungal Rx from my mo. Using Biotene mouth rinse several times a day can prevent it.
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Hi Leanne-Thanks for the reply. Yes, he had me take two steriods the day before, two the day of treatment...and I think there was more in the IV mix. I didnt have to take any afterwards. The face breakout is really upsetting, looks like I have the measles. It is a good 30-50 bumps easy. I mentioned it to the nurse on the phone yesterday and she didnt offer anything except the acne creams. I hope I am not stuck with this until April. Bad enough to feel bad and go thru all the rest, and then to have a face full of pimples-ugh. My face was really clear before. I had wondered if maybe benadryl or something would help-since it is an allergic reaction, anyone know?
I called the dr back today to get a script called in for the diarreha, it is daily...think I need something stronger than the immodium.
Weird about the pepper taste w perjeta, my throat actually burns....ice cream feels good.
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vettegirl call your oncologist now and tell her/him about all your side effects. Some of these can be resolved. I had some bad heartburn and was on 2 drugs by the time chemo ended but at least I didn't have to suffer. Try using biotene toothpaste and mouthwash for dry mouth. Be sure to drink plenty of fluids too. It really does help.
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Agree with lago + you may have to be insistent that the RN get with the Dr and call something in for you. I found my RN was not very good at following up. Push for what you need. You shouldn't have to suffer.
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Vettegirl - sorry you have to be here but glad you found us. Lots of great advice from these ladies - I was going to add that asking your dentist (if they're nearby) for a post-op extra soft toothbrush might help, too. My husband's periodontist found out I was going to be doing chemo last year and sent him home with a fistfull and they were a lifesaver. Had to brush my teeth with a regular "soft" toothbrush in the hospital one weekend, and it was torture.
Hope you get some relief soon!
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vettegirl - I had the multiple bumps all over my chin that looked like acne thing, too. It only happened after my first TCH. I was told to wash with a very gentle facewash - Cetaphil. It cleared up for me in a few days, and I did not get it back with subsequent TCH's. Hope it works for you!
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vettegirl, I started taking Lysine about 2/3 of the way through chemo and I think it really helped. If you google Lysine / mouth sores / chemo you'll find several links to follow.
nicky, have you ever tried curcumin/bioperine? It is an anti-inflammatory and it has really helped me with lower back pain and I can feel a real difference if I don't take it. My 79 year old father-in-law started taking it and he was able to go to Costa Rica on vacation a few months after having trouble getting around (he's sold on it now as well). I told a friend about it a few months ago and not long ago she texted me and said "it's working!"
One of the reasons I started taking it is because it's said to cause apoptosis/cell death in breast cancer cells. I started taking it before I knew my tumor was Her2 positive but it just so happens that it is said to cause cell death to Her2 cells. After I had been taking it for a few weeks I realized my back pain had dropped off to almost nothing. When I had to stop taking it two weeks before my first surgery I started to feel the old familiar back/hip pain. I realize your disk problems are very serious and involve lots of degeneration but I thought I'd suggest the curcumin just in case you're interested. We order Doctor's Best brand but there are other brands that combine the curcumin with the bioperine (pepper). Apparently pepper is synergistic with the curcumin. They also recommend taking it with some fat. Sometimes I'll eat two green olives or I'll take a teaspoon of EVVO (olive oil) with it. In any case, I'm hoping your pain gets better - and soon!
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Update on the ovarian cysts: met with the PA yesterday who basically couldn't do anything because my MO was unreachable because of the holiday.
She took one look at the ultrasound report and said, "well we should just take your ovaries out!"
I'm supposed to call back Monday to see if we can get something done next week (I'm hoping for at least a Lupron shot), but couldn't get in to see MO until the end of next week to formulate a game plan.
Thankfully, the remaining cysts are behaving.
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Thanks for the suggestion LeeA, I'd heard that too and have been taking it for a while.
An update - thankfully my pain meds are doing their job and I'm not feeling nearly so bad as I was. I feel almost human again!
I am having an issue with sleep though, but I'm not letting it get to me. I figure that its not a big deal; if i don't sleep well, at least I can take it easy for the day. I'm averaging 3 1/2 - 4 hours a night, but 1 night it was 1/2 hour............definitely not the time to make any important décisions!
I know I could take something to help me sleep, but honestly getting to sleep isn't the problem. When i do sleep, either I'm woken up by pain when i turn over, or I'm woken by pain from being in the same position for too long. Or by hot flushes. A vicious circle!!
Nicky
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Vettegirl I'm sure they are giving u benedryl with u'r drip that should help also. Like everyone said anything that is different for u and makes u uncomfortable go to ur Dr. about it.
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vettegirl~ I had terrible acne after my first treatment. It was all over my face, chest, and upper back. My MO gave me a prescription for doxycyline. It cleared up very quickly. I also suggest the Biotene mouthwash. I used it and did not have mouth sores.
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