TRIPLE POSITIVE GROUP
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Hi, New here. just had my second chemo a week ago. (TCHP). The SE are really kicking my butt and I feel like I have a pharmacy at home now. Having IBS also I am trying to quit the cramping that chemo has triggered. Not eating much, as it causes cramps. Just started Bentl last night. Also have been taking Norco for headaches, gas-x, culturelle, Zofran and lomotil. It's a beautiful weekend but don't have enough energy to enjoy it. So tired of being sick and tired.
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Dear Ohiptripleplus, Warm welcome to the BCO community. We are sorry to hear about your side effects but we are glad that you reached out here to this compassionate and informed community of others sharing similar paths. Keep us posted and stay connected. The Mods
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Welcome Ohi. So sorry you need to join--but you are in the best place for information, advice, love, and friends. When I joined summer 2012 one of the best pieces of advice I received from someone on the BC site was to find the groups that pertained to my needs. I found the chemo group that started the month I did (July 2012), I found the rads group for my month, I found this group, then the oral meds group. I found interest groups also--but I am not active anymore on those--foods, children, books, etc. This group and my chemo group were my lifesavers. I have made life long friends-someday my UK sister in chemo and therapy and love and I will meet.
You can say and ask anything here. Really. We talk about poop and pee and 'rhhoids and vomit and significant (or semi-significant or ex husbands from the 8th circle of hell) others. We worry when someone doesn't post for a bit.
Side-effects suck big green weinies. What works for one person may not work for you--but ask and you will have many answers. I have IBS also--adds to the diarrea for sure. Then--the constipation from narcotics on top of IBS constipation--then the 'rhhoids. I tried Bentyl years ago and did not have success. I know it worked for others though.
Ask your questions. Share your fears. Some or many on the board will have experience. And we have a couple members that provide more medical education on treatments than anyone I have ever met. This is a group of wonderful supportive women.
susan
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Hi Ohio,
Sorry you are going through a pretty horrible time. I finally finished the herceptin a couple of weeks ago. Chemo is the worst. I remember thinking it would never end and I would never feel better, but I did and you will. I know it's not much consolation now, but try to lean on others, including this forum, as much as you can. When people offer to help, let them. Rest and drink lots of fluids. It's the best advice I can give. May God bless you and give you peace.
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Ohiotripleplus- Sorry that you are having such a rough time. What part of Ohio are you from? I live in Solon Ohio. I had all my treatments at University Hospital Seidman Cancer . I am 3 1/2 years out with NED.. Hang in there it all worth it..Stay hydrated it helps..
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Thanks all for the encouragement. I know this is my worst week, but I still feel bad that I had to have 3 days off from work. Really puts them in a bind. Also it is a perfect week end here and I still have flowers to put in. I love gardening, but I am so weak I have almost blacked out when trying to work outside.😔
I am in Delaware, Ohio
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Ohio,, welcome: I had pretty bad SE that first week, wanted to die, but I have hung in and learned to not OVERDO and to HYDRATE the day before, day of and keep drinking. Have had almost every SE you could get, and really want to quit, it sucks big time. Tonight I found blood in the urine which I have complained about now for several weeks, but they seem to ignore it, so Monday I may complain or wait till Tuesday because this is probably a kidney stone, no more pain in back so maybe it's gone or I have bigger issues? In the meantime, benedryl keeps me asleep thru the night except when emptying the kidneys. Eyes are weepy from herceptin, so try to figure which side effect comes after which drugs you get, that helps me. Ask when you can and look back thru some of the responses for feed back.... Feel better gals.
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I need some help. I completed my 6 rounds of TCHP and just finished up my double mastectomy. Pathology came back and the chemo didn't work. What does that even mean? I mean, I know what it means, but is there still hope for me? What now? Has this happened to anyone else
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Hi Ladies ... Hope everyone is doing as well as possible ... I had a bone scan done last Thursday.... My oncologist said to wait until after taxol was finished, but my family doctor said to do it and her office made the appointment. I am 60 and have never had one. I was suppose to be getting one every 2 years after my last period. The last one was long ago after the lining of my uterus was lazored out due to heavy bleeding. At least now I have something to compare the next scan to. The oncologist ordered a MRI with and without contrast on my brain ( having it done Tuesday). He said what is going on is not chemo brain. I think I'm allergic to taxol or what it is mixed with. While I was having my last treatment ( I have 8 more) my brain went blank several times. It felt so strange and scary. I have been having neurothopy in my feet, legs , hands and face. He said he has never seen it in the face before. But I read it could happen in face too.... Everyday it seems like something different happens to this old body. My blood counts are still so low... Neutrophils count was 1.4 after 2 Neupogen shots. Now they say I have 3 again after the next treatment if there is one. The oncologist will decide after the MRI if the treatment plans will change. There is an end to this journey one day.
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sophie - I had neuropathy in my tongue and mouth starting from the first treatment - it did go away once I was done, and I know there was at least one poster on the weekly Taxol/Herceptin thread that had facial neuropathy. It has improved since she finished chemo. If you are potentially allergic to Taxol have they discussed Abraxane? My understanding is that it is Taxol without the solvents - that is what can cause issues for some.
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I had some neuropathy at the tip of my nose and around my mouth beginning round 5. It wasn't noticable all the time, it would come and go. I'm 7 months pfc and it is gone.
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Does anyone get blood tests to make sure the anti-hormone drugs are working? My MO says no, but I'm having no se's from arimidex so I'm hoping its doing its job.
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debiann - I do not have any testing for hormones - but I had a total hyst/ooph nine years before treatment. Don't know if that makes any difference. I think some of those who post here may have had tests done to determine if they were menopausal, but don't know if they have had continued testing done.
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Question.... Do those of you with electronic access to your medical records get test results immediately? As usual , I am waiting for a week for the results of my bone scan. Have had enough of this.....
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I have results the next day and my blood work results the same day it's a great thing and not so great at times when I received my pet scan results radiologist said it was all clear except my liver had a small spot with a slightly higher uptake I was so worried about it until I spoke with both my doctors who said it wasn't an issue.
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thx Stephmoen!
They call you or is it via electronic health records( EHRS )? I'm a huge advocate for patient access. My hospital is not up to speed obviously and I'm gonna talk to someone .
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Mine is called mychart I have an app on my phone it's awesome all my appointments test results medications are on it and I can even message my dr through it I actually called my drs after I received my results to discuss it with them
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Stephmoen
You are very fortunate to have the state of the art in this arena! You've given me info that I will use to get my hospital moving ahead! Thank you
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Mine is a major cancer center, (NCCN), and they have EHRS, but- all it shows is who my doctors are, what meds I am on, and when my next appts are. As part of the deal for "having access", well, then they are not considered part of your protected health information anymore, and I would have to sign saying I agreed with/knew that. So I refused, because it didnt have Any cloinic notes, path reports, nothing really 'interesting', just the basic stuff I knew by heart. So I just pick up results from the previous time when I am there the next time. If they could promise to safeguard and actually have more info on my patient portal, I might consider it. Luckily, it doesnt take long at med recs to get stuff. She knows me by sight there now! My friend who goes to VA has excellent EHRS there, I am kinda jealous.
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tomboy
My husband uses the VA...despite private insurance...because he has gotten great care there and the EhR system is great. Think that was supposed to be the model.
I think I've probably given up on the notion that any info is private or secure anymore.
I was one of millions whose records may have been breached @ BC/BS.
Do you think I could contact medical records directly to get my result? Never occurred to me...
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I'm able to get my test results from MyChart too. It gives me test results, appointment reminders, allows me to pay my bill, and send messages to my Dr.
Unfortunately, I'm also one that may have had my info breached through BC/BS.
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Hello to all. Welcome to the new people. And Ang, cute grandbaby! (I'm a bit behind)
ashla, call your doctor and tell them you want the results. I have my chart from Aurora. I get the test results there by the next day. Occasionally if it needs interpretation it takes a week. Xrays, etc. But usually they call to tell me if something isn't right. The blood tests are always there the next day.
Much love
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hi Moonflwr:)
Called my doctor and left 2 messages! Very, very unhappy...
Meanwhile, I've been on an AI holiday for 3 weeks and felt much better...even my skin is soft once again!
Going on Aromasin( exemestane) today. Every other day to start. Anyone with advice about it? It's apparently a completely different chemical reaction than Femara & arimidex... $194 per month...with insurance discount .until I reach my co pay!
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I'm on Aromasin. In terms of SEs, I've had the usual hot flashes and was pretty moody until MO prescribed Celexa (it's an SSRI). Otherwise, I feel fine. I take Aromasin in the morning after I've eaten breakfast, along with my other meds. MO says that 80% of women do fine on Aromasin, but that 20% experience joint pain that runs the gamut from annoying to debilitating. Some of the ladies on the Aromasin board also blame it for hair thinning; that hasn't happened to me.
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thank you Elainethere! Hope I am as fortunate as you! The hair loss seems to go with all of them..sadly. Was told by my MIA MO that it has less musculoskeletal issues as a S/E...
We shall see.
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ashla - lago is on Aromasin after switching from Arimidex, I believe. She might share some info about how she is doing on it.
I have seemychart and my doctor will link labs and imaging reports once he has looked at them. He receives an email with results and that prompts him to review and then link the report. If I have a pending result I have occasionally also had a call from his nurse to let me know things look good so that I wouldn't worry. Seemychart also lets me graph labs so that I can see the trending pattern.
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thanks SpecialK!
Still no word. I'm assuming no news is good news but..excuse my acronym... But WTF?
You are also state of the art. Gonna have a talk with someone next week when I see the doctor.
My hospital just joined mega system New YOrk Hospital Presbyterian so I imagine it will get there eventually.
Thx again:)
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ashla - also, amazingly, the military now has electronic charting and a portal that you can make appointments and send messages to your physician. I have not yet tried the appointment making tool but I need to get a new PT referral and want to talk with my PCM about metformin (slightly elevated glucose and borderline A1C) once again, so I think I am going to try it.
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that's great Special K! How I would love that kind of access!
Reading a lot about Metformin( husband takes it) one of the only drugs with some good side effects!
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Hi, Ashla. Good luck on Aromasin. I wanted to try it, since 1.Arimidex, 2. tamoxifen, 3. femara, and now 4, tamoxifen again, have ALL caused unholy pain, especially to my poor feet, mostly. And my back, hands hips etc. I had tried to talk to my onc's np, and she told me that I couldn't try aromasin unless i had progression, in which case I would have to have it in combo with affinitor. Which I want NO part of affinitor, and also by the way, seems to be used mostly on women who are ER+ her2-.
So I got a three month break from all of them and am now back on tamoxifen. And my feet never stopped hurting, I am on pain pills and gabapentin because of the pain. I had been walking five miles a day, and sadly, don't do anything near that now... So, when I went to read my clinic notes from that last visit, i noticed my onc said I had fibromyalgia! Hmmm, no one ever told me that before! So yesterday, my primary care physician, said no you don't. it is the medicine. He is the one who treats my pain, and also the one who is interested in my health, and mental health, as a whole. Before BC, I only saw him once or twice a year. Once a month now.
So, in the beginning of all of this, I just got what ever papers they handed me, sometimes path reports, but mostly blood tests. But I got very curious about six months into it, and had ordered ALL clinic notes, office visit notes etc. It was about 2 inches thick, and Veeery interesting. Wow, I even got to read all about the surgery itself! I did have to pay about $80. A few pennies a page. There are so many awful things said about me personally in them, and also plain mistakes, I couldn't believe it! They even tried to say it was my own fault that I got lymphedema, because I washed the underside of a vehicle! No, I had told bs when she asked if i was trying to get back to normal actions, that i tried to help my boyfriend wash his truck. I sat on a bucket and tried to gently wash the wheel well of one tire, very gingerly and had to stop. I was on chemo at the time, and neeeeeedeed to lie down, immediately! And called me non compliant, even though I did everything they asked me to do. What ever. Too many stories to tell here. And if I can ever stand to, I am going to try to get all the things like that ammended. I am thinking about transfering to UCLA, or the other, USC, I think, for the rest of my follow up, but even that just seems like too much trouble....
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