TRIPLE POSITIVE GROUP

PoseyGirl

oh, yes...see what you mean. I might have checked off chest walk as I assumed they had radiated my chest wall. I do recall my RO saying at our first meeting that we could possibly skip five sessions. At the time I didn't know what she meant, but she must have been referring to the boosts. I was then given the boosts. Perhaps since I didn't argue it. I may just ask at my next appointment. Thanks so much ;

Dannajae

Hi everyone,

Well, I have my treatment plan. Radiation; Taxol once a week for 12 weeks; Herceptin once every 3 weeks for a year; hormone blockers for 5 years. Next week I get a genetics assessment Thursday and see the radiation oncologist on Friday. Right now the issues in the air are the outside possibility I'd have the BRCA gene and whether I'll have internal or external radiation. Internal radiation would be prior to the chemo and external would be after the chemo... The doc states that nausea shouldn't be too big of a problem, but there will be fatigue...and of course I'll lose my hair.

Questions:

Do ports hurt?

When does your hair start growing back? When the chemo ends?

Has anyone experienced Peripheral Neuropathy as a side effect?

How do I find the Facebook group?

So far, I've been really tough but I'm tired this week (before I've even started treatment, lol) -- and overwhelmed with looking at head covering options and worrying about work and every little thing.

I have a fantastic prognosis so I should be grateful.

Thanks for listening.

stephaniebc

ports do not hurt, in fact i know some women who didn't bother to have them removed after their treatment. the first couple of days were very unpleasant for me -- my body felt invaded and certain positions were painful -- but my body adjusted very quickly and now i completely forget about it.

my hair started growing back about 2 months after my last taxol infusion, but i also had a course of EC before that, which is even harder on the hair. maybe your follicles won't take as hard a hit with just taxol.

i had zero neuropathy.

Cowgirl13

Dannajae, Hap's advice to rest up before treatment is excellent! I think the more you can do this the better. I wasn't able to rest up before this journey...I entered it completely burned out and hadn't had a vacation in a year. Good luck!

Taco1946

Danna - if I understand what you are saying about "internal" versus "external" radiation, I got the internal (brachytherapy) before chemo. If you are a candidate (age and tumor size seem to be the main things) they want to do it before your surgical cavity closes. I started less than 10 days after surgery and was done a week later. If I haven't correctly interpreted what you mean by internal, just ignore all this.

With Taxol, I lost my hair everywhere (and I mean everywhere) after about 4 weeks and it still fairly sparse on top - 5 months post Taxol - but many don't lose it all or have it growing back before they are done. I am 71 (and I know that makes a difference) but I was more comfortable with my totally bald head than I am now with two bald spots on the crown. I had a number of wigs from a friend but DH didn't like the one I did and I never wore any of them - just scarves or hats.

With Taxol, the first 48 hours were the hardest - the steroids interfered with sleeping but I was tired. I always really had to pay attention to constipation. If you will be working during chemo, I suggest you try for a Friday afternoon session. That will give you the weekend to recover. I wasn't nauseated but did find I was more comfortable with a daily nexium. I had snotty, bloody nose. At about week 5, I started getting very painful neuropathy and stopped the Taxol after 8 sessions with my MO's blessing. I lost two toenails after Taxol finished but did a gel manicure on my hands and they did well.

I was uncomfortable for about 48 hours after port placement (felt like they had pulled my shoulder out) and if you can wait at least a week before you start chemo after it is put in, I recommend that. Now, 6 months out, I just take it for granted. Probably won't take it out right away even after I finish the Herceptin in Jan. I read in someone's post that she wore her bathing suit and got a slight tan line and her doctor put the port in following that line (pretty clever I thought). I am a (bad but enthusiastic) golfer and the port certainly hasn't been a problem for me there either.

My Facebook group was formed from the BC site "starting chemo Feb 2017" by one of the ladies in the group smart enough to do it. Start by looking for that when you know whether rads will be first or later. There is also a "weekly Taxol" group on this site as well as one when you know what your AI will be. Too soon to worry about that now though.

Some call Taxol "chemo lite" and reading others posts, it certainly seems that we Taxol ladies have a much easier time of it. There are side effects but most can be managed and it sounds like you have a good team. Talk to them about SE as you go along because there are things that can be done (slowing down the infusions, SE medication etc., changes in your "pre chemo" cocktail etc.

My biggest lesson in this has been to let people help me which is hard for many of us. I chose to be very public about my diagnosis from the beginning and have been totally supported (again I do think age is an issue here) and have actually gotten a few friends to get their long postponed mammograms.

Stay close and keep asking questions. Someone will have the experience to give you some advice and many will provide support.

Cherry-sw

Hi guys, I was cleaning some mushrooms in the kitchen sink and saw that veins on my left hand got swelled a lot, when I elevated my hand the blood ran down but when I took it down it swellt again. When I am saying swelling I mean like I have not seen before, not that much. Anything familiar Cherry

Leslie2016

Thanks for the eyelash answers. Seems it all depends on the person, and feels like maybe I'm going to be one of the people that doesn't get long ones back. I guess if that's the worse "forever" side effect I get, I can live with it.

Port questions...my port bugged me for a good 2-4 weeks after getting it inserted, but a lot of that was because my seatbelt rubbed on it, etc. Actually using the port now? No issues. I'm glad to have it. Someone mentioned not removing it at the end...my Dr has said we will probably leave it in for a year or 2 after I'm done herceptin. I don't think it can be reinserted in the same spot once removed, so many doctors will leave it in in case it's needed again. It really is nice to limit the arm pokes with every needle you need.

SpecialK

cherry - chemo definitely is hard on the veins, but not sure if it could be a drug allergy unless you have more universal swelling. Is your chemo administered on the left side - do you have a port or is your hand being used?

danna - my port was installed under the mastectomy flap during that surgery (I did adjuvant chemo) so any discomfort was blended in with the surgical discomfort. After the normal course of healing I had no pain or any other issues with my port. I kept it for 6 years since I had no incision from installation I chose not to remove it until my oncologist said it was time for it to go. I used lidocaine cream (EMLA) prior to going to the center for chemo, I put a blob on the port then covered it with plastic wrap so it wouldn't wipe off. I also had them spray it with freezing spray - I only felt slight pressure when the port was accessed, not pain. My port was a tiny subclavian placed right below the hollow of my throat - this was good because it was undetectable, you could only find it by feel, but this made it slightly more difficult for the onc nurses, so I pre-empted any discomfort with the EMLA and spray. I am linking the hair timeline from another member so you can get an idea. She is a TP and had TCH, so you may experience slower fallout and faster grow back than she did. It goes from right to left and there are tiny dates in the corner:

http://www.lauren3g.com/transfer/hair/Lagohairtransition_03.jpg

Brachytherapy is usually offered to women who are post-menopausal, and have enough breast tissue remaining after lumpectomy to have a particular margin around the site - so you can't be small breasted, but it is usually done very shortly after surgery. If it has already been a month since your surgery, this may disqualify you from using that rads modality.

I was concerned about chemo induced peripheral neuropathy (CIPN) and I took 30g of L-Glutamine powder daily, in three 10g doses dissolved in a cold non-acidic drink, plus a regular capsule of Vitamin B6 to try to prevent it. I experienced tingling after each of the first three infusions, that resolved before the next one. For the final three infusions the tingling and numbness did not resolve, but I continued with the supplements and all neuropathy was gone by about 90 days after the last chemo. You will see some posts on this site about icing during the taxane portion of the chemo to prevent neuropathy. I am more skeptical about whether it has any effect on neuropathy, but I did it to prevent nail lifting, which is a known taxane side effect. I iced my fingers and toes with bags of frozen peas for the entire duration of the Taxotere, and held ice chips in my mouth to prevent sores.

For the Facebook page - there isn't a central one, it seems to be something that each chemo month (starting chemo in XX month, 2017, etc.) chooses to do independently of BCO. I am not on FB so I can't help you there. It seems likely that you may start chemo in September - if that group has not already formed, it will shortly I am sure.

Here is a link to the weekly Taxol thread:

https://community.breastcancer.org/forum/69/topics/788735?page=268#post_5032379

Cherry-sw

SpecialK, I have piccline on the opposite arm, my right sid

SpecialK

cherry - keep an eye on it, and let your oncologist know about it at your next appointment, or sooner if it gets worse. Try to elevate that arm for a while to see if that helps. Chemo drugs are notoriously hard on your veins so it may represent some irritation that is temporary.

Cherry-sw

HapB, SpecialK, it is not swelled if I am not doing anything, it is fine when I am typing for example, only that time I was doing the dishes, but I will call them.

Cherry-sw

guys, how do you get your Herceptin? I am getting it as a shot in my tie, is it a standard? Because you have mentioned before you can get it trough the iv.

SpecialK

cherry - injectable Herceptin is not being used yet in the US - those of us who live here get it infused by IV, from 30-90 minutes depending on the center. I believe injectable Herceptin is available in Europe and the UK.

T-Sue

Danna, congrats on having an action plan! I know it is overwhelming, take it one day, one hour at a time.

Our diagnosis and treatment plans are similar although I did not have radiation or lumpectomy (bmx for me). Hopefully I can help with some of your questions.

Port: my surgeon put a port in my upper arm the morning of my first chemo. This made a long first day but easier in some ways to already have the port accessed. I have had a positive experience with my port. It is out of the way (in the, uh, flabby part of my upper arrm), no pain or soreness at all after the first couple days post-op, and most importantly, the oncology nurses access it quickly and painlessly to draw blood and access the port for chemo. Such a relief as we get weekly chemo and then regular herceptin.

Hair: that's my big question now as I've just finished weekly Taxol and can't wait to see my hair return. The general consensus seems to be that hair begins to grow back 4-8 weeks post final chemo (PFC). With the weekly low dose Taxol, my hair stayed put until week 4 and then shed throughout the rest of treatment. I was able to go bare headed until about week 8 when it became obviously thin. Since then I mostly wear low caps and scarves, but never my lonely, cute wig 😉 I cut my hair really short before chemo and never buzzed it. I'd say I lost about 80% of it.

I never had neuropathy or any nail issues

I just found one FB group: called: HER 2 Positive Breast Cancer Patient / Family Survivors Group

Hang in there!

SpecialK

Here is Sept 2017's starting chemo group on BCO. It didn't have Sept in the title so it could be easily missed.

https://community.breastcancer.org/forum/69/topics/858068?page=1#post_5032111

Cherry-sw

SpecialK, I see, I thought US was the frontline in this regard, I know that the company that is producing Herceptin is Swiss-own though. Since I am only reading and posting on this forum every deviation is strange to me. But if it is a standard for Europe than I can only tell that I did not feel anything and it was given before my first Taxol infusion.

I called the clinic about the veins and they said to contact them if it will get worse or if I will be feeling sick.

moodyblues

Danna   Before my port, every time I had blood drawn, it was at least three sticks before they could get a vein (my arms/hand were terribly bruised each time).  I didn't have any problems with my port, bruising of course after it was inserted but only slight pain for a day or so and Tylenol helped that.  I don't sleep on my right (port) side because there is a small bit of discomfort (pulling) when I do.  I am grateful for my port because it has made it so easy for me with labs, chemo etc.   

I have slight neuropathy on the very tips of my fingers and use VIT B6 for that 100 mg, with ONCO approval. 

One SE that I had was bad acid indigestion/reflux and constant burping, I put up with it for awhile and asked the ONCO nurse and she suggested Zantac.  It helped immediately...I sure wish I would have asked sooner!

I have found out that if I have a SE, I now ask right away on here and then also ask my ONCO if it's ok.  My error at first was thinking It was a SE and I just had to 'deal' with it.  NOT!  Most ladies on here have found solutions and share willingly.  I am so very grateful for this site and for all of the encouragement and pep talks. 

Melanie

SpecialK

cherry - Roche conducted two trials - SafeHer and PrefHer, all with study locations outside the US, but the studies were registered with the United States NIH clinical trials registry. I don't know if switching from infused to injectable Herceptin would require Roche (Genentech is their wholly owned subsidiary in the US that manages Herceptin) to subject the injectable version to clinical trials here on the path to FDA approval.

Here are the links to those trials:

https://clinicaltrials.gov/ct2/show/study/NCT01401166?show_locs=Y#locn

https://clinicaltrials.gov/ct2/show/NCT01566721

Lita19901

Cherry - I'm glad you called your doctor about the vein swelling as we really need to make sure that nothing is being overlooked. I did want to share something that happened to me whe I was about your age. - I remember one day "lifeguarding" while my kids and a bunch of their friends were in the pool and realizing the veins in my hands looked weird. Hands down, large veins, hands up, normal veins. It freaked me out so I went to see my doctor who broke It to me very gently that this was part of the normal aging process... grrr...

Cherry-sw

Lita19001, you made my day)) but also scared me before I red the end of it)) I know, and never in my life have I been looking forward to age now, to be able to, was just going and talking my mom about it, that I want to be here. Cherry.

Cherry-sw

SpecialK, thank you! Soon I will be there lecturing my doctors. I wonder whether they do not read themselves and just follow the directions or If they just do not discuss it with their patients like less you know better sleep at night. When I tell them how things are done in US they are saying but their survival rates are the same. And to me it is strange that they do not want even talk about it Cherry

Cherry-sw

T-Sue, you are done, what a great feeling it must be. If I congratulated you before I am happy to do it again, I am still drowsy from my treatment. When you are saying that you have a port in your arm this is an actual port, like port-au-cath, or how do you call it or is it a piccline? I have been told that there were two choices: port or piccline, mesnwhile portrequired a surgery and had to stay there for two years the piccline can be removed right after the last chemodan infusion. And here they give Herceptin subcutaneously. The piccline does bitne bother me now but in the beginning they pushed it in to deep and I could feel it like against my throat, very odd feeling, but they now pulled it out a bit. Cherry

Cherry-sw

This is what I also wanted to know about the LGlutamine and vitamin B6 but my onc told me it was not needed and went for two months training. Now I will meet two others, I will ask them instead. Port for six years, I guess you stop noticing it after some time. I saw these pictures of Lago-Lauren back in 2011 when she posted her first linky. It was so strange because she when I saw it the pictures from 2012-2013 were already there. I am reading this thread and also posting in the end of it, it is like The Lake House.

I have another question, maybe getting too personal, I was about to have my period the days after first infusion and it did not come. I am not pregnant, cannot be, we did not do it since the last time. Does it mean that I am in the chemo pause already? I did not know it could work this fast. Cherr

SpecialK

cherry - sub-Q Herceptin is an advancement, it is us who are behind the times, lol! I am pretty sure a lot of oncologists here would like to be able to use sub-Q because patients would be in infusion chairs for shorter periods, it would streamline things.

Lita19901

Cherry - you have so many things going for you - a small, early stage cancer, you're young and you hav a family that loves and needs you. If I was a betting person, I'd bet on you!

SpecialK

cherry - the Lake House is a great movie, and yes - going back and forth has to be kind of interesting. Aside from the initial install of the port I didn't notice it because you couldn't even see it. In my profile avatar picture it is fully exposed right by the hollow of my throat, but because it was a tiny one you don't notice it. I could only tell where it was by feeling around for it. My oncologist felt that the L-Glutamine and B6 wasn't going to hurt anything so I could take it if I wanted to. Same with icing my fingers and toes. I will never know if things would have been worse if I had not done those things - I do know that for the first infusion I got at least a dozen mouth sores, I kept ice in my mouth for all subsequent infusions, no mouth sores.

hap - there is no consensus on what AI has the least side effects - it is pretty individualized, and yes, they can cause hair thinning, but that is definitely not a universal side effect. I have taken several different brands of Femara (the AI my oncologist favors for its performance edge), and one of Arimidex. I have avoided Aromasin due to the steroidal component. Over the six years I have taken an AI I took Femara for the first six months, then switched to Arimidex for a couple of years, then back to Femara, to the present. My experience has been that the fewer fillers and additives the better, as they are often what can cause some of the issues. Each manufacturer should show the list of inactive ingredients in addition to the active letrozole, anastrazole or exemestane. If you have trouble with one, switch to another maker, or another drug. Another option is to switch to the brand name if you have trouble with the generic equivalents, but insurance may not cover - mine does not.

Cherry-sw

Lita, sobbing I have admit, you made my day twice, it is actually past midnight here. I want bet on me too, I simply have too, but I do not perceive it as a small cit is pretty aggressive and I just want to know how to optimize my chances to get rid of it. I am trying to understand as much as I can and even keep together the home and the life that we have. This all is so frustratin and here I do not have any contact group. Honestly, If I had a chance to drive for a couple of hours to just sit down and have a cup of tea with some of you guys I would have go right away. Thank you for being there and saying what ever itis you are saying, it makes me feel better, hugs Cherry

Cherry-sw

Ok, suddenly I am proud of the Europen approach, If is better to give it as a shot you say then this is what we are having. I was very anxious but it did not hurt.

SpecialK, you are right this port you had is very little, I would have never noticed it on this picture If you would nothave mentioned. The Lake House is one of mine and my mom's favourite movies, I love Keanu Reeves, he is just smocky. I think I got one mouth sore but I am washing with baking soda and salt and I have been sucking on ice for all two hours of my infusion. I will try to get B6, apparently you can get it infused with another meds before the chemo Cherry

T-Sue

Thanks Cherry, I am THRILLLED to be done with chemo. It is definitely a port that I have in my arm. It did require a short, one hour surgery and will stay in for one year while I continue my hercptin intravenously. To me, it has been worth it. Rest up tonight!

Taco1946

Hap - about hair. I am 5 months post Taxol and still have 2 bare spots on top. I have attributed it to my age (and I know we are close), my genes (my mother had very little hair when she died) and previous health issues and not to herceptin or AI's but what do I know. I have never been totally bald before but I have lost significant hair 3 times in the last ten years (twice from the stresses related to surgeries and once trying to get seizure medication regulated). I too am frustrated by this - I actually liked the way I looked totally bald better than how I do now.

It seems to me reading these posts that most feel they do best on Teva but one size definitely does not fit all. My experience after 5 months is that the SE's are different and I am still trying to decide which I can tolerate the best. On "Accord" I had joint pain and on "Teva" I seem to be having more hot flashes and more insomnia. Right now I'll take the latter as I don't have to get up and operate heavy machinery. Didn't have back pain with either.

Cherry, keep showing up here and on the other threads which speak to your issues. Being told I was triple positive really threw me too as I hadn't expected to need chemo and thought my prognosis was better than it is. I don't know where you live but your team should have contacts for local support groups. I the states you could get connected with a local "Bosum Buddies" group just be googling but I don't know if they are outside of the US. Many of us do suffer from PTSD after diagnosis and need some professional help sorting it all out. Don't be afraid to ask for it.