TRIPLE POSITIVE GROUP
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Hi everyone, oh wow lots of stff going on. I feel so bad for u gals with bad knees cuz to me certain areas are worse to have pain, like knees cuz of walking, back cuz of moving and shoulders cus that affects u;r arms all this crap it's like bones just weaken and do whatever it is they do. I'm such a domino theory kind of person, if u think during chemo u were probably achy and then u just got worse thru it all and then meds came and then really achey and now more problems--I know Thank God no cancer (most of the tme) but it's still pain that hits u and maybe more shots or even surgeries and of course PT and it helps but it's all still there degenerative back, disc, sever Arthritis (that advances like a dam opening) so it doesn't usually just go away when all treatment stops, Mayb it depends on what and how long treatment was I don't know, but most days something reminds u of it--I'm not saying u'r thinking about it all the time but movement with pain u'r reminded---Just my thinking.
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Hi Cypher, sorry to hear about your knee. My tumor was 6mm, clear PET scan, no lymph nodes and they classified it as a new primary.
I want to be on board with all treatments but there has been a lot of confusion here as to if the tissue was breast, was lymph and finally they settled on breast. This happens in less than 2% of patients after mastectomy so I just want to feel confident that everyone knows whats what in terms of latest treatments etc..
I could go to Dana Farber or Chicago ( my sister lives in Chicago) Right now Im so confused and blindsided, like everyone else said, cancer doesnt stop the rest of life around you, kids picking out colleges, single Mom blah blah blah, work uncooperative so I am already out on disability and going crazy. Some days seem worse than others. This group is inspiring, I dont know how I will get through it and then I read on, about everyone who has gone through it, hopeful:)
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Pbrain your doctors may be able to get you in sooner. Let your onc know.
Dental problems. I saw my dentist before chemo. He made sure that my teeth were in tip top shape. I had a cleaning the day before BMX. Had a filling done about 3 weeks after BMX (2 weeks before chemo) and he went over them again. Discussed how important it was to floss during chemo and use the dry mouth, Biotene mouth wash. I had no issues after chemo. I have a great dentist.
oconnor2450 I know you'll get through it. Most people come to the boards to seek help with issues. Most that do well don't bother to even post. It is a time suck and you will get some side effects but you won't get them all. Hey I never had any nausea from chemo and my taste changes were minimal. I ate everything. But of course the hair does go. It came back though as you can see from my photo.
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Finally! something I can actually help with;Dental Issues, definitely see your dentist before tmt. if you dont floss, start now, you may bleed a little for 10-14 days, that will end and your mouth will be much healthier.
Consult with yr Onc before any invasive dental procedures during tmt. You can also request topical Fl tmt to aid with caries prevention.
If yr having problems with dry mouth, stay away from mouthwashes, with the exception of Biotene or anything by Spry. For severe symptoms ask your dentist and ok it with your Onc for Magic Mouthwash, it works and is soothing for those with major oral health symptoms. Use a soft toothbrush, you can also minimize the risk of mucosotis that is most likely to begin 7-10 days after an infusion by drinking ice water during the infusion, rinsing with warm saline after the infusion, same idea as cold caps, only for your mouth:) An alcohol free 0.12% Chlorhexidine rinse can also be helpful.
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I sucked on ice chips during taxotere infusion. Guess that might of helped with the teeth issue but really helped with mouth sores. Once I did that I never got another mouth sore
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Oconner somewhere along the line I missed it---What do u do--u know an awful lot about mouth issues.
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oconnor, if you do do chemo -- what Lago said, except that you can keep your hair with the cold caps. There's a whole thread on it on here if you're interested.
Unfortunately I believe they do recommend chemo even for very small her2+ tumors....
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The cut off for no chemo with HER2+ tumors I belive is a tumor less that 5mm (thats mm not cm). Granted check on that I am not positive and these things do change all the time.
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Lago, as far as I know that is still the NCCN guideline for very small Her2+ tumors. However there are some institutions (like MD And) that are treating under 5 mm - esp. if you are younger (I think under 50 or so) based upon the results of their retrospective studies. It is very controversial still, and leaves the patient with making a difficult decision.
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Well I have joined a gym....been doing classes also like zuma and hula hooping etc...I'm worn out! My onc. says she is gonna see how I do without the nelasta shot next chemo BC I start taxotere and herceptin. I have started changing diets but hard lol....Now I am gonnatry to lose weight by juicing....Do u know when you juice in a blender do you keep peels on or do you peel them? Like the apple or peach? I looked juicing up but only give ingredients! I feel better going to gym...but I need to work on food control...I hope juicing helps...and lemons are good for weight loss also...! Yay I'm excited to to do that it made me stronger but I hope it is all good...Plus my doc. told me after she touched my breast it feels softer and even might have a complete response..hoping and praying to live a normal...healthy life after all this
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Goutlaw I have never juiced but when I was on taxotere/carpoplatin/herceptin they said no fresh veg/ fruit unless it was peeled .Somethimg to do with the pesticide on the veg/fruit. Just something you might want to consider.
I have a question for those of you that have been on Herceptin or finished Herceptin. My herceptin treatment has always been 90 minutes every 3 weeks this past time whenI went for treatment the nurse siad the pharmacy approved a 30 minute drip. Just curious if anyone else had been on a 9- minute drip & & switched to a 30 minute.The nurse said that she used to work in At Emory in Atlanta & thatis normally how they did it the 1st treatment was 90 minutes & each one after was 30 if tolerated 1st well. I didn't have any problems but just thought it was strange. I'm going to ask my Ong. about it when I see him again.
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Mom2c,
I had the same situation with the herceptin infusion toward the end of the process. I had most of my post chemo infusions over 1 1/2 or 1 1/4 hrs. A new nurse was on and said since I had never had any issues there was no reason we couldn't speed it up to 30 minutes. Well..it knocked me for a loop! I was absolutely exhausted and even very depressed. It took me at least a week to figure out what had caused this sudden dip in my stamina and psyche and a bit longer to bounce back. We had a discussion about it here in the forum and it seems that my bad reaction to a speeded up infusion was pretty much the exception. There were a few others who had issues they thought might have timing related but I'll let them chime in .
I never had another 30 minute infusion and was never asked to do it again by oher RNs but was prepared to refuse.0 -
Headline from the Onion" "Everyone In Michaels Crafts Store Currently Experiencing A Hot Flash "!
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Hahaha, I love the Onion! Thanks for the laugh:)
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HAR!! So true. And I almost went to Michael's today...
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See Ashla how u bring all the important news to us as it happens. LOL That show is so funny.
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goutlaw Awesome! I think trying to eat health foods and healthy portions is all you should be doing on chemo. Trust me if you start with that you will eventually lose especially if you are working out too. Many of us gained weight (including me) on chemo due to water retention so DO NOT get discouraged. Also if your taste buds change, have Diarrhea, heart burn or constipation you might not be able to eat your planned diet. I had the last two and found that I had to stop eating nuts, peanut butter and peppers one out of the 3 weeks on chemo after the 3rd tx. Doesn't sound like a big deal but they are a big part of my diet.
I always think of portion control by measure size. Portion is either the size of my 2/3 my fist or 1/2 the size of my fist. If its cheese or junk it's more like the size of my thumb
Always had my herceptin 30 minutes. Not sure about the first time because we started everything slowly but because I wasn't having any issues they kept speeding things up.
Love the Onion. They are based here in Chicago.
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When I changed from 90 minute to 30 minute Herceptin I had extremely bad bone/joint pain right after that infusion. I did not have bone/joint pain from either Taxotere or Neulasta, but when I went back to 90 minute Herceptin I had no further problems. There has also been some commentary regarding a possible link between ejection fraction problems and the speed of the Herceptin infusion.
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Yea I use the calorie calculator...my fitness pal.....its an app on my phone and scan the barcode on my foods lol...Let's see...
Yea the Rn at chemo said fruits BC of bacteria..my family doctor says take off peels and wash them good under hot water ...and I should b good
Don't know if I should do this while not getting nelasta though... I honestly washed my salads and all and been eating nuts....and fruits and veggies....not sick yet and halfway done with 4 treatment yay!
Largo why do we get fluid retention during chemo? Does this go down after chemo? Guess that's y she looked at my legs last visit but no edema noted to bilateral extremities0 -
goutlaw my onc said that I could eat anything I wanted, even sushi if I was on Nuelasta. (Did not eat Sushi). I ate lots of salads though. Be sure to check with your onc to see if it's OK as long as you're taking nuelasta. They know what your white counts are. Mine were never low.
Some people retain from steroids, some like me from Taxotere. The steroids actually kept me from retaining fluid so as soon as I went off I gained. Even Anastrozole makes me retain fluid, but that is a less common SE of Anastrozole. I'm one of the special ones that get it.
I had fluid retention in my legs and my midsection. There were many shoes I couldn't wear on Chemo. My high snow boots wouldn't zip over my calves.
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My Herceptin was 30 minutes- no problems at all.. Drove myself to and from and often went to lunch or shopping on my way home.
Ashla ,your Michaels reference made me laugh. I did go to Michaels today,happy to say no hot flashes. lol
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Ok, I admit to hot flashes at Michaels, anyone else cop to getting diarrhea whenever you step into a fabric store? I swear, every time! LOL. Of course that is still a problem for me and was of course during tx too. Still bothering me, so when I go crazy over fruits I plan on staying at home the next day. Sigh.. not fun trying s new med, not helping much. Watermelon seems to ne ok, but strawberries, and other not so much. Double sigh. Oh well, it is what it is. Much love.
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Oh moon the big D is no fun as most know I have had chronic D for over 5 yrs and I gave in and wear Depends but still know when it starts I don't leave the house, with me it makes no difference what I eat it just happens, Just lately it's been less but my colon has moved up my side so maybe that's why--Not sure yet but who knows.???? I've been o meds for most of this time for it--It helps sometimes.
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Cami, yeah, sucks. I have depends handy, but don't need them all the time. I can usually tell when its going to be one of those days. Sigh. LOL
Much love to all.0 -
Hi everyone,
Those of you that have ports an interesting thing happened with mine. The nurses in Ons office like to get blood out of them before administering the medication. Twice my port refused to give blood, but would take the medicine just fine so they scheduled me for a blood thinner appt. the night before that appt. I dreamt that my port gave blood and sure enough it did so no blood thinner needed. My last Herceptin appt. it refused to give blood again. Oh well, it takes the medication just fine so I'm not too worried about it. The port became uncomfortable right about the same time it started acting up. Nurse also told me that the Onc will want me to keep it for 2 years past treatment because of the aggressiveness of the cancer that is no longer there. I don't know if it will last that long, but time will tell. Whenever I get Herceptin I think it is given in like 40 minutes and so far I've never had a problem with it. I'm over half way through so I hope it stays good until its finished. I just stared Tamoxifen so I'm hoping I won't experience problems with that either. I pray for all to be healthy and happy.
Take care,
Rhonda0 -
Rhonda before they take bood drink a full glass of water, see if that makes a difference--it should.
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I'll try it, but I do drink a lot of water. I was able to drop 13 pounds since my last chemo (may 9) by drinking a lot of water, eating plenty of fruit and veggies and walking at least two miles a day at a quick pace. I have a few pounds to go, but I feel great since loosing weight. I didn't realize how bad I felt until it was all over with. This board helped me every step of the way and I will always be eternally grateful.
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Rhonda, sometimes they get plugged. Sometimes they can pop open by the next time. Otherwise, they just put in some meds and it works. I always used mine for all blood draws, as well as meds. Souch easier than being stuck multiple times.
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I have a port but have never had a problem with it.They also do my blood draws before my infusion.I know the nurses won't administer the medication un;ess they get blood in the syringe before hooking up the med's. They always have to show it to another nurse to make sure there is blood in the syringe. i guess to make sure there isn't a blockage in the port.
Thanls, everyone for the responses about the timong on the Herceptin. i hjave been a little more tired this round. i normally drive myself to all my appointments. I even drove myself to a few chemo appointment. I was one of the few Blessed ones that had very few side effects from chemo. Everyone is different my older sister had horrible side effects & 3 years out is still suffering from some.
Does anyone have any types on losing weight. I lost some on chemo but have several more to go.I do watch my diet .I never really liked sweets till I started chemo but since I did chemo & have finished I crave them.I don't indulge often but don't deprive myself. I have started walking & plan on starting Yoga when my son starts school next week.I'd like to do some strength traing but don't know since I developed Lymphedema in my right hand & wrist.Does anyone have any ideas on what else I could do.
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Rhonda2 I thought my onc wanted me to keep it in 2 years post Herceptin but it was only 2 years total. She may only want you to keep it another year. I got mine out last November… little over 2 years total. Just be sure to have it flushes regularly.
Mom2C I do strength training and I have some minor LE in my 10 node side. I started out with small weights. Never got above 10lbs though. I always wear my sleeves when doing upper body work outs. Actually wear the one sleeve all day.
Losing weight, Eat right and portion control. Stay away from the crap and high fat foods. Eat more veggies. Simple things like no butter, watering down your salad dressing, smaller cheese portions can cut out a lot of calories. Ketchup has a lot of sugar and calories but salsa has a lot less. Trust me a burger tastes just as good with Salsa.
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