TRIPLE POSITIVE GROUP

formydaughter

I had an echo with expanders in. They had a lot of trouble getting what they needed around them. And it hurt a lot! I couldn't stop crying the whole time. I was pretty close post BMX at the time. No drop in results though. And no MUGA experience. But the echos were much easier after my exchange.

Girlstrong

With all of this good discussion on Mugas , I have a question. What risks are associated with a MUGA scan? I have had 9 MUGA scans since all of this stuff started. I'm scheduled for my 10th next week and I'm thinking of canceling. The reason I've had soooo many is because I'm in a clinical trial that requires MUGA scans a lot!

Anonymous

My first echo was with expanders, it was around 65, I think. then I had to have them removed due to a pseudomona infection, so second one was with nothing, but it wasnt comfortable either. Third one the expanders were back in. Uncomfortable and fourth and fifth, final one was with the implants. Not painful, but weird, as they have to move them around a lot. All of this was while I was on herceptin. Mine dropped to 50 on the fourth one, which was the end of herceptin. the fifth one was to check it three months after and it was back up again.

chrissie29

Formydaughter and Fluffqueen-thanks for the info.  I thought it was painful when they were taking pictures from below my expanders-my ribs felt like they were on fire.  I am not looking forward to the next ones because I will still have expanders in for all the while I am on Herceptin. 

Anonymous

Yeah, it wasnt fun, lol. They tried to be really gentle and did a pretty good job. I went a lot smaller in size than I was, so they didn't have to work too hard to get to where they needed, but it definately wasnt comfortable. Not to makeyou worry, but it was less comfortable as they got bigger because it was a lot tighter. Take a pain pill before you go. My onc said he would order a muga if the counts were dropping and looking suspicious, but I only got close to the edge on my last infusion.

runningcello

@PMR, so many messages to get through but i was scheduled for 6 rounds of TCHP but stopped TC after my 5th due to SEs and completed the HP on my 6th.. i had a complete pathologic response as well!! truthfully, if the chemo is working and they find that it is gone in a MRI after the 4th or 5th.. maybe you don't need 6 sessions.

lago

Girlstrong I do believe MUGAs expose you to less radiation than CT scans.

Pbrain

My echo techs would put bubbled saline into my circulation to enhance the image. They could never find a vein in my arm or hand, so they poked at me forever and I'd leave there beaten and bruised. I only had one MUGA and it was so much easier. They accessed my port, put the radioactive stuff in there, made me sit in the waiting room about 15 minutes, called me back and rolled some plate over top of me a couple of times with me in different positions, un-accessed my port and sent me on my way. I preferred that to the sonar rolling, pushing, "hold your breath", pushing, roll over...etc. I was always sore after an echo.

stillstruggling

Hello All. I am the newest member of the triple positive group. It is good to know that I am not alone.

lago

Hi stillstruggling Welcome. Are you sure you are stage IIB? If your tumor is 1cm and you had no node involvement it seems you would be a stage I

Jerseygirl927

hello group, had double mastectomy January 13, 2015. For triple + breast cancer. I just went thru the first chemotherapy infusion on February 26 and am in serious discomfort right now I think that I may also have lymphadema cause my surgery sight still has fluid build up each day. My breast surgeon released me, but feel I should get another opinion and see if I should see a therapist for it. As for the side effects, I am fairly exhausted, mouth sores, cramping, and diarrhea most of the time. Afraid to move outdoors at this point. Taking meds but really not improving much. Any suggestions

Anonymous

Jersey...did you have reconstruction? If so, I would call your plastic surgeon. If not, then your breast surgeon. I was still seeing mine at two months out. Is your fluid buildup in your arms or specifically where your surgery was?

On your side effects, don't be afraid to call your oncologist to tell them that you need some different meds. I didn't have mouth sores, but there are some special mouthwashes. Being tired is pretty normal. Try to take it easy when possible. Drink lots of fluids. I had diarrhea and constipation alternating throughout. I preferred the diarrhea, lol. Much less painful.

Definitely call your docs though. They are there to help you and don't want you to suffer. I called mine late at night a couple times when I was running a low grade fever.

mom2threeboys

Jersey girl, definitely ask your doc for a referral to a physical therapist with experience dealing with BC patients. My PT begins each sessoin with lymphatic massage to drain everything ,even though I do not have much lymphedema. It is also easy to do at home once you understand the process. She also made some suggestions about my sleeping position with my arm and ordered a sleeve and glove for me to use on long trips. Love my PT sessions as I always feel wonderful after she works on me. My "happy visits" during this process :-)

Bren58

welcome still struggling and jersey girl. I am so sorry that you had to find us, but glad you found this amazing group of women.

Jersey, just because your surgeon has released you doesn't mean you can go back if you are having problems. I would definitely call and let them know about your fluid build up. If they are unresponsive to your concerns, then definitely find another surgeon.

Also defintley call your MO about the chemo side effects. They should be able to help you with managing them. I had terrible mouth sores and was given a script for something called Magic Mouthwash (yes that is what it is really called!) It was amazing in dealing with the pain and calming them down. For your next chemo, if you are getting taxol or taxotere, you might want to suck on ice chips during that infusion. It can help with decreasing the occurrence of getting mouth sores.

As for the diarrhea, you really need to monitor that because you don't want to get dehydrated.

Jerseygirl927

morning group, I have the magic mouthwash, kinda burns, but has helped, now the alternating diarrhea and constipation is very taxing, don't know which way to choose I think that just trying to learn the stages of your body in the beginning is a project. Learning hourly about it all. I think that I will call the BS on Monday to explain and get a script to see a PT lymphadema specialist, unfortunately my surgeon is an hour away, but accessible by phone when needed. What a challenge!

SpecialK

jersey - fluid buildup at the surgery site seems possibly more indicative of a seroma than lymphedema.  Does this seem like swelling or a collection of fluid?  Seromas can resolve on their own, but it can take quite a while.  You can also have a seroma drained, but they sometimes form again.  Lymphedema is different from a pocket of fluid - it is lymphatic fluid trapped in individual cells rather than a pocket of fluid, and presents more as swelling.  Unless your swelling or fluid represents lymphedema a therapist can't improve the situation, I would suggest determining whether this is a seroma first before attempting to find a certified therapist for LE.

For mouth sores I used Caphosol - got rid of them within 48 hours.  Others have also used Mugard. I recommend holding crushed ice in your mouth during your infusion (during the taxane portion) to prevent mouth sores.  I had at least a dozen mouth sores after my first infusion, used the Caphosol and they went away.  I used ice on subsequent infusions and had no more issues.  Magic mouthwash is used more for fungal issues in the mouth, may not help with mouth sores.

Jerseygirl927

special. Fluid mostly under arms and thr the side of the incision under the arms, They were drained before, but has come back, tight by the end of the day. Better in mornings. Mouth sores fading for now, got the magic mouthwash, but that really doesn't help, kinda burns. Going back to baking soda. Almost daily issue is cramping, diarrhea and blowouts. Not sure if I have nausea, as so many other things going on. Appetite is good, but the blow out comes after a meal of 1 baked potatoe... Dah. I can't figure what my body is doing. Tons of gas too, or blowout. Never sure.i plan to do water ice during the tax infusion, ice I did but have to check the timing coming up on the 19 th. Any other suggestions for coping with chemo?

stillstruggling

Hi Iago. I think that is right. I know that my sentinel was dissected and thank God there was no cancer found. The tumor was less than 2 centimeters. I could be wrong about the stage. It is what I heard but not sure it is what the doctor said. Have you completed treatment? I three more chemotherapy infusions with herceptin to follow.

knmtwins

Jersey - are you in a chemo group here? Mine started in July and I found the July chemo sisters group was great. Although we were on different chemo's, many of us were on the same one. I was TCHP and we all chatted, down to details about what was happening and what was working. My MO had me make a solution of 1/4tsp baking soda and 1/4 tsp salt to 1 qt water. He had me rinse with it frequently. Each time I got maybe the beginning of one mouth sore, because I had forgotten to start rinsing. I kept a bottle in my bathroom and 1 in the kitchen. Whenever I'd pass those sinks, I'd try to remember to rinse. As to 'the big D' as we called the running and sometimes not making it to the bathroom, with the pain that made you wonder if you should dial 911... Do NOT get constipated. Talk to your MO about what you can do about that. Miralax and Magnesium Citrate (yuck) were what helped me. Then when the D hit, it wasn't so painful. As to D, I had D1, imodium, D2 lomiltil. Tell your MO and get these. Also, I had a bin in the bathroom, that had all my supplies, including a water bottle, so I'd drink when trapped on the commode, to replace fluids coming out. I also found if I had something to distract me, the time there wasn't as frightening. So a book, I-Pad, etc. BTW - My TCPH before surgery, gave me a complete pathological response, no cancer cells found when I had surgery, so it WAS worth it!!!

lago

stillstruggling I'm about to celebrate 5 years NED this august 31st. I've been done with chemo over 4 years. I stay here to let you know it does get better.

formydaughter

running cello - glad you you've made it through! Complete path response - awesome!! The 6 sessions is what it is because that was what they used in the trial approving the chemo combo. My MO told me that quite possibly fewer (or more) sessions would work for different individuals. But we use the standard just because that's what was done in the trial. Sounds like 5 treatments was perfect for you. I only had 4 of the 6 treatments but never knew my response since it was post BMX. Your story gives me better hope. Thank you

wpmoon

hi all, joining in on this group too since a little extra help can't hurt. I'm 27 and diagnosed 12/1/14, lumpectomy and sentinel lymph node biopsy on 12/15/14. Stage 1, grade 3, triple positive, 1.3cm, 0/3 node involvement.

started my chemo last Monday, and feeling a little lackadaisical the last few days. I think it's time for a nap... Nice to meet you all!

formydaughter

wpmoon, sleep well! Chemo is rough. Take extra care of you during this time. Welcome to our group

CassieCat

wpmoon, welcome. Good luck to you as you go through chemo. Glad to hear there was no node involvement for you.

ElaineTherese

wpmoon -- welcome, and yes, it's always time for a nap, even for me (who finished chemo 12/3/14). Best of luck to you!

Anonymous

oh my gosh, I nap almost every day, even if only for fifteen minutes. about three to four, I hit a wall.

RobinLK

Which osteoporosis meds are given intravenously? I failed oral treatments - GERD. My port is out, good luck on finding a vein. Ugh.... 5 tries for IV before port removal, 2 failed attempts with ultrasound assist. Not looking forward to this. Is -2.5 that bad
To those who have just joined us, sorry you have to be here. You have stumbled into a thread with extremely knowledgable and supportive women!

Here is a link to the Starting Chemo March 2015 thread ----->March Chemo

Tomboy

Hi Robinlk, I am not sure if any of em are given intravenously?!? But I do get a prolia shot in my belly once every six months. I think I am going to have to take a break from it tho, need some dental work.

welcome wpmoon

SpecialK

robin - Reclast is a once a year intravenous bisphosphonate.  Prolia is a subcutaneous injection every 6 months.  I get Prolia, can't do the oral meds either - had GERD surgery in '95.

wpmoon - welcome!

CassieCat

I'm going in for a dexascan in the near future. Any advice, tips, anything I should know?