TRIPLE POSITIVE GROUP

Cherry-sw

HapB, I believe my back pain is not Herceptin related, I have been having problems with my back on and off but it usually got better. Even back in spring I felt that my back was stiff and I found myself trying to stretch while waiting for some documents in front of the copier. Right after the diagnosis I have been crying a lot, got all that tensed and was laying in bed a lot. Two weeks after the diagnosis I got those muscle ties that were not going better with meds or exercises and I started to Google, you know what happened next. I have been going to appointments with PT who recently told me that one of my legs is slightly, maybe a few millimeters but still shorter than the other one and it may cause the pain in my heaps, I was like bring it on, who cares anymore. But I can imagine that Herceptin or even paklitaxel are not good for the bones, my nurse said today that Taxol can also cause bone pain. I have pain in my heals and joints, I had to have it checked, this professor who I consulted the last time ordered it for me but he said that in his opinion I did not need the scan but he was ordering it to give me a peace of mind.

KimCee

Hi Marla,

Sorry you are here but glad you found this site and this particular board. I also had my first BC 18 years ago. I lived in NJ at the time and had my treatment at Hackensack vs MSK, which is where I had my first of two opinions. I am currently doing Taxol/Herceptin for 12 weeks and then Herceptin every 3 weeks for a year. First BC was not Her2+ so this is new and a not wanted aspect.

You can read my diagnosis and treatments below.

Hugs to you!!!

Magari

Hi, all -

I've been reading here but this is my first post on the thread. Went to my chemo "teaching session" yesterday and will have my first infusion on Monday.

It all feels pretty surreal. My original plan (based on the info I had from my biopsy, MRI and ultrasound) had been to have bilateral mastectomy with immediate direct to implant reconstruction, recover for a month or so and move forward - one and done. But the surgical pathology showed more cancer and TP, so here I am....

Picked up my prescriptions today, as well as a pill reminder to keep track of them all. I am usually a pretty healthy person so this is completely foreign territory for me.

I'm using a phone app called Journey (which is really designed for journaling) to log all the meds I'm taking, symptoms I'm experiencing, and appointments I must go to. I created different tags for each category, which you can sort by. Am finding it helpful to have all of this in one place, even though I also use Google Calendar for appointments.

Marla712

Hi Cherry,

So comforting to communicate with others that have been through this. My family has been wonderful, but this is just the beginning. My tumor was 1.2 cm. And I am Triple Positive; Her2, Estrogen and Progesterone. I was want to stay informed and keep a positive outlook as much as I can. Has anyone been to Sloan Kettering In Monmouth NJ or in NYC?

Cherry-sw

Marla712, I am not in US, I live in Europe, just hanging here so to speak. If you do not have any affected nodes your treatment most certainly will be weekly Taxol x 12. I have done my 12 Taxol already but will be doing three EC three weeks apart then Herceptin. Taxol is doable, there is weekly Taxol thread, the ladies there are very helpful, you can also join a chemo group that starts in Nov-Dec. I know exactly what you mean, it is priceless to talk to people who are going through the same thing.

Cherry-sw

Magari, sorry that you had to find yourself here but you will find a lot of support on these threads, it has been my lifeline, the ladies here are wonderful and share a lot of information. I completely understand the feeling of it being surreal, for weeks if not for months I felt trapped in a really bad dream but life goes on and you can do it. They really are so much better now to tackle the SE, you will need the meds, do not think about them being drugs, they will be saving your life. Hang in there, you can do it, hugs, Cherry

Peoy

Cherry - way to go! I believe you're heading the right path. Nobody knows what the future holds, at least you're doing whatever possible to minimise recurrence.

Marla712 - when I was diagnosed with BC, my BS sent me for bone scan n CT thorax, abdomen & pelvis before prescribing treatment. Have u done these scans? If not, u may want to ask your BS.

Marla712

Thanks, Peoy.

I have not had those tests done.

I will ask for them tomorrow when I go see my breast surgeon.

Marla712

KimCee,

My first breast cancer was not Her2 either. How are you feeling with your treatment so far? Are you using the cold cap. I'm sorry, but I have so many questions. You are the first person that I've spoken to that this is their second time.

rljes

Hi Magari - I am on the same treatment as you it looks like.  I will start my first chemo the day after you on Tuesday.  Scary isn't it?

  I have all my pre-meds and arsenal of OTC's. I could open my own drugstore.  From the wise women that went before me - I plan to Hydrate/Hydrate/Hydrate, eat small meal before chemo, (some fast) take Compazine and Ativan every 6 hours afterwards, (Zofran is given during chemo) Steriods before/after, and have Imodium AD on hand on any sign of the BIg D.  (of course have plenty of things for the Big C) Mouthwash mixture of baking soda/salt and water all day long - and Claritin if I take Neulasta - oh, and don't forget the EMLA cream for the port.  Am I missing anything? 

Thinking warm thoughts of Cherry-sw and HapB and to all my Triple + friends. 

rljes

I just took the survey by the moderators - Did anyone know there is a Pill form of Herceptin? Anybody taking it instead of the infusion? 

Peoy

Rljess - I'm currently undergoing chemo so Herceptin is given thru infusion. My oncologist mentioned that after chemo when I needed to take Herceptin for a year (17 treatments of 52 weeks), it will given as a shot (jab). I've not heard of Herceptin pills.

KimCee

Hi Marla,

I am feeling fine so far. I return to work tomorrow. I have done 4 of my Taxol/Herceptin so far. Just buzzed off my hair. I am not doing cold cap because my hair after taxotere 18 years ago wasn't worth saving. Grew back thin and fine. I am icing my hands and feet during Taxol infusion to save nails and hopefully keep neuropathy away.

I went to MSK in Dover, NJ 18 years ago. Oncologist felt I did not need chemo. Had a second opinion at Hackensack, oncologist felt that I was young and said he would recommend 4 cycles of adriamycin and taxotere. That is what I decided to do.

If you are node negative, you will more than likely get the recommendation for Taxol and Herceptin.

Ask all the questions you need to. Members here are awesome.

By the way, my friend did cold cap and she did not lose her hair. She did taxotere for her breast cancer number 2 and was very worried about her hair and taxotere. She was first diagnosed in 1999 like me. She is her2 negative. Another friend had first bc in 1996 and was her2 negative. She and I got it again this past July. She is her2 positive this time too. We are doing the exact same treatment. She is doing treatment in Hackensack. I know you are from NJ so I am sure you heard of Hackensack

ElaineTherese

Marla,

Sorry to hear that you're dealing with BC a second time! There are a few different chemo regimens that triple positive patients get. Sometimes, it depends on your oncologist. My oncologist recommended Adriamycin + Cytoxan (x 4) and then Taxol (X 12) + Herceptin + Perjeta. But, if I had had heart problems, she might have recommended Taxotere + Carboplatin + Herceptin + Perjeta. (AC can be tough on the heart.) Of course, if my tumor had been smaller and I didn't have nodal involvement, I might have gotten Taxol (X 12) + Herceptin + Perjeta.

Good luck!

TreysRib

Agree. I have amazing insurance through my employer but the oncology staff enrolled me in a coupon program of sorts for Herceptin. It is not needs based. Thrilled my oncologist proactively enrolled me. I honestly wouldn't have thought there would be a non-needs based program out there.

Suburbs

rljess, your chemo summary was excellent. You were a star pupil in your class. For our new participants here, I'll add a few more:


1.) Other than constipation and nausea, sometimes the digestive ailment from chemo is acid reflux. In that case, one or two acid reducers may be necessary. Pepcid and nexium, for example, are prescribed to cover that. One is long-term and one works short-term.

2.) The plethora of drugs to deal with side effects can be overwhelming. If you have been healthy until now, just the sheer number of pills you might take will leave you incredulous, but they do help.

3.) Some women can save their hair through use of cool caps. Losing your hair is traumatic. I finished chemo in May and my hair is now 2 inches long. I had long straight hair. It is now curly and about 2 inches long. I still feel a shock when I see myself in the mirror.

4.) There is no shame in taking anti-anxiety or anti-depression remedies. Even if you have never taken them previously, you may need them now.

Finally, I would not have made it this far without the support of friends and family. Equally important was the fellowship and kindness of everyone here. For that I am today very very grateful. Again, for our new triple positives, I hope you find the same comfort and support that I have experienced.

Cherry-sw

Peoy, Herceptin comes either as an infusion or a subcutaneous injection, I receive it as an injection, but I now I had to stop Herceptin while doing EC, I will resume it in January.

deni1661

cherry- happy to hear your bone scan results were good. I pray your infusion goes well so you can keep moving forward.

Marla, so sorry you have cancer again. This is a great place for support and inspiration.

Peoy and Magari - welcome to our group. Triple positive is an overwhelming diagnosis initially but the support from everyone here makes the journey less scary because we are in this fight together.

My treatment was different than others on this board....I participated in a clinical trial and did Herceptin and Perjeta infusions every 3 weeks for 6 months, then had Unilateral mastectomy with immediate DIEP recon. I finished a full year of HP Aug 30. No chemo or radiation. I had a great response to treatment, clear margins and nodes with only a few cancer cells left in the breast tissue. I accepted the risk of not doing chemo and am at peace with my choice. Thoughts of recurrence do cross my mind but I rely on my faith to stay positive. I am happy with my recon and have revision surgery next week. I take an AI Letrazole daily which causes pain and a few other annoying SEs. Things do get better eventually albeit slowly. I have learned to have a lot of patience with this cancer business.

Wishing everyone a very blessed and Happy Thanksgiving if you celebrate and a blessed day if you don't. Hugs to all

coachvicky

Today I am thankful for many things.

One, I am alive.

Two, the woman in this forum have given me support, love, and knowledge that only another triple P can understand.

Vicky

Marla712

Happy Thanksgiving To All!

Besides being thankful for family and friends, I am now ever so thankful for finding this community of women sharing their experiences. I silently read and learn more and more each day. Thank You.

PoseyGirl

Happy Thanksgiving to all my lovely neighbours to the South . I too am thankful for our community here.

Thanks, Mods, for the referral to the Mojo board. I knew of that thread, but recall reading something about a particular product here on our TP forum.

Thanks also to all of you for your responses re: my liver MRI and other. It's next week.

I have the book Forks Over Knives along with a few other books, and will be picking recipes that look appealing!

Welcome to the new ladies here...you are in great company with this criwd

Cherry-sw

Good Morning America, and Canada) I hope your Thanksgiving's dinners were delicious. Even if do not not celebrate it here I want to tell you that I am very grateful that I found this forum and got acquainted with all of you, it really did a lot of difference for me.

I have a question: anyone retaining water from Taxol and what did you do?

I gained a lot of weight on Taxol but the weeks after I gained even more even though I started to control what and how much I have been eating, no sugar, minimum carbs. This week I saw that my legs swell towards evening and I am getting bloated so I though I must be retaining water. I saw my nurse today at the clinic and she said that this is a common effect of paklitaxel and that deuretic won't help, it will subside on its own, my kidney values taken on Monday looked good too. I also start EC on Monday so I wonder whether it will contribute to more swelling? I also have pain in my legs and feet, well, and in my back, but according to the nurse these are the common SE from paklitaxel too. If deuretic cannot help is there anything one can do? I really like went up 5 kg in two weeks, it cannot be all weight.

Cherry-sw

Hi HapB, no right now I am not, I am starting EC next week.

LTWJ

I too have edema ( leg,feet swelling) and mine all started 4 weeks past chemo. My heart health is excellent and I have also been told that it is due to chemo and no diuretics will help. It starts ok in tne morning and swells throughout tne day, night being 5ne worst. I was told to excerise and put my feet up and not crossing legs). I bought some magnesium lotion that helps, also mineral salts in tne bath. I was to.d it is an after effect from tne steroid surgery that I was givn during chemo. Compression socks hel my feet but my calves get huge

Cherry-sw

LTWJ, you just basically described my symptoms but my worst swelling is around my belly. First I thought it was due to C but now when I got that part under control and my thighs started to swell so I cannot do the exercises my PT prescribed, I understood it must be water retention. I mean I could do these exercises last weekend and now I cannot bent my knees to stretch my thighs, on Monday I was laying down with my leg bent underneath me, yesterday I could not do it.

SpecialK

Swelling from taxanes is super common, I had this as well, but my MO did prescribe a diuretic that did not leach potsssium and was easier on the kidneys, triamterene. I started it during chemo and I stayed it on it for almost a year, finally tapering off. It worked well to eliminate the fluid retention and caused no ancillary problems

Cherry-sw

SpecialK, I remember reading on this thread about many of you who did Taxotere retaining fluid. One year sounds a really long time, but right now I am worried about shorter term consequences, i.e. how would it affect me during my upcoming EC treatment? I feel some discomfort where my kidneys are supposed to be, it could be just my back or paranoia.

coachvicky

All,

I swell. It started when I first had chemo and continues with Arimidex. There are days I can not get my wedding bands on.

I take a daily diuretic and a potassium pill. Both are a prescription. I have difficulty emptying my bladder without these.

By now you have probably figured what I said when I got the statement that this may or may not help. Really I said. Are you the one trying to pee and get on your rings? I got the prescriptions. My MO renews them like clockwork.

Also, my GYN told me after my hysterectomy and when I started Arimidex that I may need to "retrain my bladder." I asked why. He said with the estrogen blocker I may experience some constriction. Sometimes I think my GYN knows more about side effects than my MO! I hope this is not too much info, but I do find myself sitting differently to empty my bladder. I can easily urinate off 2 pounds in the morning.

Vicky

Cherry-sw

coachvicky, I have no problem to pee, in the morning, a couple of times during the night, a number of times during the day. I drink a lot of tea and water, had a coffee today.

Suburbs

Hi everyone. I have been taking arnica Montana for swelling for the past two weeks. It has helped so much with the tightness and swelling from the reconstruction. I'm not sure if it is ok to take with chemo since I was told I had to avoid all supplements other than a basic multivitamin. I was not aware swelling was another of the evil side effects of anastrozole.

SpecialK, I hope you are feeling better and that you are getting your hearing back.