TRIPLE POSITIVE GROUP
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Tresjolie, two of the oncologists I met told me the same thing, that the SE were not worth it and the clinic I am treated at conducted their own smaller trial few years back.
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Wow...thanks for the Nerlynx update, ladies. If all these oncologists are saying this, then it's important to heed that. I will still ask my oncologist about it, but guessing she'll say the same.
damn. Wouldn't it be nice if there were another 'biggie' development!!
On another note, a little random poll...how do you all feel as the Terry Fox runs and October comes round? While I appreciate it for the funds raised, I don't want 10 people coming to me asking to put my names on their bibs, etc. I'm not interested in joining the fanfare. Yes, perhaps I am bah humbug, but it puts me into a place I don't like. I guess you could say it's my version of PTSD. Others?
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I don't do "Pinktober." I just don't. But, my daughter likes to buy pink things, and I don't interfere. She wants to show her support, and that's fine.
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Before my diagnosis I never questioned the pink October, I used to buy a pin for my husband and none for myself. I felt great respect and sadness for women who had to deal with that but I basically lived my life and could not dive into it. The attitude was probably close to: it is awful, poor those ladies, but does it mean that I should only think about this and stop living. This I believe how the majority of people without cancer think, even if they get paranoid from time to time, they still think that cancer will not happen to them, which is true, it won't and they keep feeling good about themselves. Now when I got this diagnosis I can see the hypocrisy and tell myself that I will just wait this month out. It feels like the majority of people do not understand and what they are doing is just done so they could feel better about themselves. Therefore to me it looks like they are pretending. My family will probably buy the pins, because this year it will mean something else to them. But I will just mentioned that they will not be doing it for me but for themselves. Cherry
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ladies...i have a friend who is getting ready to do herceptin only. Her MO is giving her a hard time about doing it over 90 minutes instead of 30. Anyone know of any studies or articles that document that the slower infusion lessens side effects?
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Hi everyone.
I was diagnosed in may this year. IDC 1.5 cm grade 3 ER/PR/her2 positive. Had a Bilateral Masectomy end May. Started on 12 week Taxol / herceptin to be followed by 1 year of herceptin every 3 weeks. Just finished cycle 8 of taxol. Once that is done, I am expected to go on Tamoxifen. I am quite worried about side affects etc. I really don't want to live a life that is debilitating.
I have been reading this thread and many other threads and they have really really helped me to calm down. I know this has been said before but I have to repeat it. The group of women i have seen here are amazing and very inspiring. You all give me hope. I am addicted to this community board now.
I was wondering if anyone in this group who is triple positive had a prosignia Test done and what were the results. Mine came out high risk (24% risk of recurrance). My MO says that with this treatment I will bring the risk down to 10%. I know that there are a number of women on this forum who have had no recurrence for quite a while. That's very encouraging but I still get very panicky. Still trying to figure how to deal with it.
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Tresjoli2, I have Herceptin even slower than that. One third of a dose every week, over 60 minutes, instead of dose dense every three weeks. My side effects are pretty minimal. The MO's and hematologist thought that initial loading dose of H gave me acute ITP (platelet disorder), so being ultra-cautious now just so I can get through it. But it could have been the Perjeta-no one really knows for sure.
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tres - I don't think there is any documented trial data that slower infusion of Herceptin offers fewer side effects, the evidence is anecdotal - but there is enough of it that it can't be discounted. The dosing instructions from the manufacturer, Genentech, indicate that it can be infused from a minimum of 30 minutes to 90 minutes. Extending the infusion time to 90 minutes is not outside the instructions, but within in, so they shouldn't be giving her a hard time. I suspect they just want to get her in and out quickly. When I received Herceptin only and was done with chemo, I usually went late in the day when others had been and gone from the infusion room and things were not as busy. I needed no special permission to infuse more slowly, I just asked for it, and encountered no resistance.
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Saadia1,
Yes, this forum has helped me so much!
Sorry you find yourself here.
Happy you will find help and support here.
Try not to worry about your side effects. However, I urge you to document every change you might experience so that your MO can make changes if needed.
I had 3 manufacturer changes to Arimidex. Third one is a charm and I can hardly tell I take it.
Vicky
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Hi Saadia1, welcome to this thread, so sorry you had to join us but as you have mentioned one gets addicted to this board because here you meet people who are in the same situation. We have the same diagnosis, I also have 1,5 cm IDC that was situated very high in outer quadrant, Grade 3, Ki67 50% and I have exactly the same treatment, my 4th Taxol and 2nd Herceptin will be Monday next week. I was diagnosed in June after my mammogram and US in January were clear. I live in Europe and where I live they do not conduct any testing because according to my clinic there is no reliable testing for Her2+. I get panicky every day especially when I think about the children. This is an unbearable situation we find ourselves in and everybody here understands your fears and sadness. Cherry
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coachvicky,
what is your brandof arimidex?
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SpecialK, how is it going for you in FL, I read "So, what's for dinner?" thread and saw you posted there that you are expecting a bad storm there. I hope it will not be severe, causing no damage. I am also thinking about joining this thread, I love cooking and will try this kale salad with orange dressing. I just have not seen any newbies on this thread so far, maybe there is another thread about food for those who are in treatment.
In Europe Herceptin is given as a shot, now I only had one but it takes the nurse ten minutes to give this shot. It must be really dense dose. I just wonder what is the difference between these two substances that the subcutaneous can be given so quickly and if it could cause more SE.
Cherry
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I guess I don't have the same feeling about people pretending, Cherry. I think that before something hits us, we live in our own world as it is. I'm not a race car driver, so I don't understand that world. And then, when it becomes your world, you learn so much about it and walk in those shoes.
Likewise with breast cancer (or any cancer), people can't possibly know what it's like until it hits us (I couldn't have personally known). Also, you're quite right; people don't really want to think of this in general; from the time we are born, we naturally stay away from discomfort.
In my opinion, when people give or wear the pin, they more often than not DO truly care. There are many empathetic people out there. So, I do see the best in the support out there, and we're at least fortunate that bc is very high profile.
I just feel very different and isolated and when I'm called out by friends during this season of fundraising, it seems to set me back psychologically...like I want to distance myself from this hot oven burner.
That's just my own feelings and I don't question yours! Just talking it out. I know where you're at and I am many days in your emotional space.
peace
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PoseyGirl, I probably put it wrong about pretending, I am not a native speaker so I probably should watch how I express myself. I meant more how I perceive their engagement because they could not possibly know. Otherwise I will second your every word about our natural avoidance of discomfort. We used to be those people, we know what the difference is. No, I am not looking forward to October and I remember what shelabela told me in the beginning that I will find out who my true friends are. Now I have chosen to tell a very few people but those I thought will understand both let me down. And I mean the expectations were not that high, no one expected any help since both do not live here. I constantly asking myself how would I behave if any of my best friends were diagnosed, would I disappoint them in the same way or if it is just no other way and no healthy person can truly understand a sick one. My manager who I have been working with for several years in the same group and who was appointed my manager this year, he has managed to stay in contact with me and both be supportive and encouraging. So far I did not feel disappointed at him. On the other hand, maybe I expect too much from people, this is not their fault that I got sick. Cherry
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Cherry - I know how you feel about Pink October, i always support Pink because I lost my sister to BC 17 years ago. Even though know I will be a good candidate for this sickness I still didn't prepare myself well. BC got me and didn't find my lump myself. People won't understand what's like to have cancer, tbh I didn't know exactly how my sister felt until I got it myself. I knew she was in pains and I gave herthe auppprts I can, but the truly painful experience you need to go though yourself to understand
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PauletteK, I am so sorry about your sister. I have always been supportive it is just now I do not want to be reminded of it by people who cannot understand what it is. I do appreciate they care but bc for them is just a one month of be reminded of more often than usual, for me it is a new reality.
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I have a question for those of you who already is on Tamoxifen, does it make the hair very thin? By now I have lost approx 50% of my hair and I expect the rest of it disappear next week. I have thick wavy hair that I cut into a short bob before chemo. Now it is so thin that I am thinking is it how I am going to look while on Tamoxifen? Cherry
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Thank you Cherry-sw and Coach Vicky for your kind words.
Coach Vicky - I am documenting everything as much as possible and will continue to do so. This forum has helped immensely in terms of helping me equip myself with the necessary information to deal with the chemo. Having said that, every situation is different. I have had a few side affects - body ache, fatigue, itching, had nausea twice but then it went away, some minor neuropathy in my toes. As I get closer to Chemo end date (Oct 4), I get both more hopeful and panicky. Does that even make sense?
Cherry - when you talk about testing, are you referring specifically to testing for recurrence risk for her2positive? My MO used the prosignia test but honestly I really don't understand the basis of his risk assessment (From 24% to 10%) but I try to take whatever solace i can from it. Part of me is still fearful and disbelieving though.
My KI was 5-10%. When I asked my MO about it, he said that as far as he was concerned it means nothing given that i am Her2positive. (sigh)
I am trying to focus on being positive and live in the moment but it's quite hard right now. My MO said that it will get better with time. I hope so. I am already quite exhausted.
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Saadia1, I do not know much about testing frankly speaking, hope another ladies on this thread will be able to give you better answers. I know that Oncotype cannot be used for Her2 positive, Mammaprint can be used though but its results are debatable according to my oncologists, they say they are not reliable. I live in a country with governmental health insurance, all oncologists are following national standards, now I have seen several oncologists, two of them who I asked about testing said the same thing. It also could be a matter of cost.
I also quite exhausted and cry several times a day. It is understandable, we are going through a trauma. My only tool so far has been telling myself that I will not dye from it today and therefore it is better to try to live than to lay in bed crying. No matter what future holds for us I feel like I would regret that I did not lived when I had a chance. It is not always going so well, but at least I feel I have figured out some way and will try to follow it. I am still though having pity parties very often and am enrolled into two different therapists. Just hang in there, you have done 2/3 of the chemo, you will be done before you know it. I wonder if depression may also be a SE of the chemo. Cherry
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HapB, this is what I am afraid of. Before I did not even care much about my hair, just had it in a pony tail and went to work. could probably fix it for some party. Now when it is shedding I really miss it.
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HapB, thank you, it takes time for hair to grow, some grow it very slowly, I am sure your hair will come back soon. I have been told by my oncologist that Taxol cannot cause permanent hair loss. You do have family too, I am sure your daughter will love to spend time with you. I mean I would have been there for my mom as she is now here for me. Do not feel lonely, you can always talk to us here. I am here very often, I work sometimes and I read the board sometimes. Other times I am doing things at home and go to my appointments. And the cats are very underestimated, mine is actually very good to be around me nowadays. She is a champ when it comes to sleeping and today I just looked at her at my bed and crushed besides her, we slept tight for a couple of hours, always something. Cherry
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Hi Hap,
I wanted to let you know that for some women, Herceptin slows the regrowth of our hair. I had my last chemo in mid-November last year, and by the time I had to have my driver's license renewed at the end of March, I still had only stubble and had to wear a wig! (By that time, my MO had me on letrozole, which I don't think helped any hair growth.)
Because of some issues I was having, my MO held up my April Herceptin infusion. I had enough of a mini burst of hair growth after missing that infusion that I suddenly had enough hair to go out in public comfortably without any head coverings.
Here it is August, and my hair is still only about three inches long on top and less on the sides. I have a few thin spots, but there is enough hair to cover those spots. I call it my gray "stuck my finger in a light socket" style, because it is very wild and curly. (But I swore, if I my hair ever grew back, I wouldn't complain. So, this is me, not complaining.)
I was very concerned because I am over 60 and I figured my age might play a role in hair regrowth. Even more concerning to me, I knew that Taxotere sometimes causes a small percentage of patients to experience permanent hair loss, and I wasn't feeling particularly lucky at that point. However, I could feel small stubble and I knew that meant the follicles had survived. Fortunately for you, Hap, Taxol does not have that profile. So hopefully, soon, you will start to see some progress.
I did take Biotin, but I have no idea if that helped or not. Patience, I am afraid, has never been one of my virtues, so I can certainly understand your consternation with seeing no regrowth. It is definitely aggravating, but I wanted you to know you are not alone.
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Just wanted to come and say hello quickly - I live in Tampa and we are about to be affected by the hurricane, so I may not post for a while. As soon as I can come back, I will!
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SpecialK, I was thinking about you and your family when I was watching CNN this morning. Please stay safe and I hope this is over soon. I saw your other post on So, what's for dinner thread, I hope your house stands and you will be able to come back to it soon. Cherry
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Stay safe, Special K.
Keeping you in my prayers.
Vicky
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I found this article posted on another thread. I wonder what is genomic high risk for recurrence vs clinic low risk?
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SpecialK, what can you do to prepare?
Thinking of you
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praying for you Specialk
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Hapb, you've spoken of your other cancers and I am wondering if you're ok sharing what you had? If not, I totally understand!! I was just wondering about your rare one where surgery was the only option. Your body truly has been through the ringer
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thinking of you SpecialK. Stay safe!
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