TRIPLE POSITIVE GROUP
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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.
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Hello All. I am the newest member of the triple positive group. It is good to know that I am not alone.
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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
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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
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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.
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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 :-)
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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.
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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!
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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.
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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?
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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.
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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!!!
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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.
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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
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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!
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wpmoon, sleep well! Chemo is rough. Take extra care of you during this time. Welcome to our group
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wpmoon, welcome. Good luck to you as you go through chemo. Glad to hear there was no node involvement for you.
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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!
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oh my gosh, I nap almost every day, even if only for fifteen minutes. about three to four, I hit a wall.
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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
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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
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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!
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I'm going in for a dexascan in the near future. Any advice, tips, anything I should know?
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cassie - they are a piece of cake. It is not closed like an MRI - just wear comfy clothing. You lie on your back on a flat table and a bar moves above you - takes about 10-15 minutes.
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Cassie, agree with SpecialK, I did it twice in the past (pre cancer) due to family history of weak bones, it was really nothing you just lie down, good luck hope the results are good.
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@formydaughter TCHP is a kick butt regiment therefore know that you are in great hands!!!!
@wprmoon, welcome! have you looked into genetic testing for your age on diagnosis? i have the PALB2 mutation.. BRCA1/2 are the more common ones but definitely not the only mutations which may potentially explain such a young diagnosis. also, as you embark on your chemotherapy journey i wish to offer you some helpful tips. they really work wonders!!!!
if you are on the taxotere, carboplatin, herceptin, perjeta plan - this is what i recommend.
1) your hair will slowly begin to fall out in the coming days and week, it may just thin out or most likely it will fall out completely. instead of watching this happen, make a celebration out of it and have a head shaving party with your family. it makes the experience slightly more tolerable. i still am praying for the day i can tie my hair in a pony tail.. slowly but surely it's growing back.
2) diarrhea post nausea/vomiting from chemo is very likely and real - perjeta seems to kick everyones but in terms of uncontrollable diarrhea.
3) invest in jolly ranchers, hersheys kisses, or flavored popsicles to get the metal taste out of your mouth and to also hydrate your body on the days you just can't stand to look at food.
4) prevention is better than cure. dehydration as a result of chemo is very real. this is what was implemented for me after i went to the hospital for dehydration. it helped a little but if you do it from the beginning it may help you more. when you go into the hospital for your neulesta shot a day or two after chemo, you should have a plan with your doctor where they give you fluids. you may also get an IV of potassium - everything just goes low as a result of chemo but IVs to give you a boost of what you're missing prior to the hard days of chemo will really help, especially in terms of flushing the toxins out of your body when you arent able to eat and drink enough.
if you have any questions, please let me know!!
i hope this journey is one filled with happiness, hope, and positivity for you. the days may seem to pass slowly but know they will pass and you will survive this!0 -
Thanks ladies! I meet with the endocrinologist in May. Will discuss options with him. Once a year sounds good to me.
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Robin I too get Prolia although typically when you can't take the pills (I got gerd too) they go to Reclast next. Reclast is an infusion once a year. Prolia is a shot 2 times a year.
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Wpmoon welcome ! I will complete my last cycle of TCHP on Monday March 16. This will be a total of 4. I had neoadjuvant. My surgery will be sometime in April. It really worked and shrunk my tumor 40% I had an Ultrasound yesterday. Like the other gals said stay hydrated. I drank water, Gatorade and lemonade. Took my nausea meds first 8 days after and hunkered down. Ice those fingers and toes each Taxotere infusion. I am thinking I may escape with intact nails. Do not get constipated. It can change fast either one or the other. We are here for you!! One other side effect that was bad for me was my nose. It hurt and the insides were swollen and bled. Get a humidifier. Use qtip with Aquaphor for inside and don't blow to hard. I had a few bloody noses. Your skin will get very dry. Use lots of lotion on every inch. I had to put Bio-oil on my face morning and night. Try to get stuff done when you feel good and prepare prepare. Make a calendar and write how you feel and your SE each day. That way you can look and see trends each cycle. Report SE to MO. Take care and bless us all.
Patty
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Thanks Iago! I know my PCP said infusion. I know it is not Prolia, I specifically asked about that. It was a name I knew! He said Prolia is generally for post menopausal women. He does not believe I am there yet, due to the evidence of cycling on my vaginal ultrasounds.Which is why he feels I am not getting protection from the tamoxifen, but that it's contributing to the bone density loss.
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