August 2015 Chemo Group
Comments
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Musogirl, I just cut and pasted your Herceptin rant and put it on my desktop. I have 100% the same feelings and yes, every $#%@ shot is worse than the last one. But the drug WORKS, we need to keep that in mind. I am going to have a post-Herceptin party FOR SURE. 15 down, 3 to go. Hang in there!
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Yes Musogirl herceptin does suck. I keep thinking it's going to get easier but only four more to go for me. I hired a personal trainer and am now four days into workouts. Hoping to lose pounds and have more energy. I've never worked out so its all new to me. It's somehow feels better to be able to complain about sore muscles and not cancer treatment. I've been seeing my therapist regularly to deal with anxiety and depression that I've had for years, so I'm really trying to improve my life. Looking forward to a better year. I can't wait to get this port out, it itches like crazy. Love you all, and am glad you're here
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I hate my port too. It bothers me everyday. In fact I got on here to ask about it--how many of you are keeping your port and how many are getting to evict it? I want to take it out and am considering asking my PS to do it in July when I have my last surgery. I'll have one more Herceptin infusion left, but they can do it through an IV, right? Just one time? Of course I need to talk to my MO about all this, he may flat out veto the idea, but I don't want to keep it in for two more years...0
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I am scheduled to have my port removed 7/25. My last chemo was 1/7 but my MO wanted me to keep the port through radiation in case I needed fluids (I didn't). It doesn't really bother me but I will be glad to have one reminder of cancer gone. It's outpatient surgery, so I would think it makes sense to do it with an already scheduled surgery.
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My MO suggested I have my port removed in September after my last Herceptin infusion, but I'm going to keep it in for a couple of years. I'm at high risk for recurrence for the first 2 to 3 years after treatment, and I'd like to keep my port in for at least that long. I don't like the port, but I love its convenience...and I have peace of mind if it's still in place.
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JenPam: okay, your post may have pushed me into the "I'll get a port" territory. Almost a year in with Herceptin and I still don't have one. And I will be in treatment the rest of my (hopefully somewhat long) life. I just have such a block about it.
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Oh Bluefrog I complain about my port but I've been so glad to have it. Put the numbing creme on 2 hours before ( 1 hour isnt enough) and you won't feel a thing during infusions. The minor surgery for implant wasn't bad at all for me.
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BlueFrog, I am 100% glad I had the port for infusions! Mine irritates me quite a bit and I can feel the tube going up through my vein near my neck which is creepy, but infusions have been such a breeze with it. If I knew I were going to have ongoing infusions I would keep it--no question!
It's just that if I am NED, and my MO is not expecting me to relapse, this thing does irritate me and creep me out just a bit. I completely understand the peace of mind it gives JenPam, but it is also a contant reminder of this while ordeal, and one I would prefer not to have. (Mine does not sit in a little pocket like it is supposed to, but sits on top of the muscle practically poking up through the skin and it--well, for lack of a better word--pinches.) My biggest concern with the whole port thing is cost. If it has to go back in, and IF I had a recurrance it WOULD go back in, it was several thousand dollars I had to cough up immediately. Not sure how I would do that again...0 -
Bluefrog, how are you? I think of you often as you are so close to my age and my two kids are 8 and 11. If you are comfortable, can you give us an update on your condition and what treatment looks like for you after the year of Herceptin?0
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Hi Bluefrog! I won't lie--I had a tough time with the port implantation surgery, though it was something of an unusual situation (let's just say I wasn't anesthesized even a little bit). But I love the convenience. The nurse sprays a little cool numbing med on top of the port & then I hardly feel the needle go in (or out). The problem with taking out a port is that scar tissue often forms in the area where it was situated, so in the future it's unlikely a port could be placed in that same precise spot.
Plus, I love freaking out my daughter with the port and its "mouse tail" up my neck.
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Musogirl: sure, I'm happy to give an update. I'm not gonna lie. It is a psychologically and emotionally weird place to be stage IV and technically terminal out of the gate. But most days are really normal. No one would know I'm sick, and right now I'm really not. My tumor markers last month were the lowest they've been. Still have natural breasts. My scans in February showed nothing new. I think I will be scanned again head to toe in August. I'm currently on herceptin, perjeta. Tamoxifen and lupron, with xgeva shots every 6 weeks (it fills in the dozens of holes in my bones). I'm sore, but no more than anyone else from no estrogen, I think. The goal is to stay on this protocol as long as I can. The concern is the heart damage herceptin can cause; mine shows a borderline change, so I am being followed by a cardiologist and put on a low dose beta blocker. I went to a metastatic conference in April. I was amazed by how many stage IV women under 40 there were, many de novo like me.
I'm not working, but stay busy with the kids. It's been wonderful to have this year with them. I'm looking forward to a fun summer. We all had such an awful summer last year that I'm wishing us all some fun and relaxation and new adventures.
Here I am with my daughter on her fifth grade trip. Can't believe she finishes elementary school this week! I feel like on the emotional side, these days are bittersweet. It is always hanging over my head that I may not be there for other milestones, but it makes the present richer.
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That is a lovely picture, BlueFrog. You are in my thoughts often.
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BlueFrog, you're in my thoughts, too. You look great in that picture; thanks for the update!
Re: port . . . I want mine out, too, but I also don't want more surgery. I'll have to remember to ask my MO what she thinks when I see her next. I have two more Herceptin infusions to go, but then I have to go back to the infusion center every month for Zoladex, so I guess I'll just get lil' buddy (my port) flushed then. . . .
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Bluefrog, HUG from across the pond! I am crying at my desk at work after reading your posting.
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Hugs to you Bluefrog--love the photo of you and your beautiful daughter!
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What a beautiful photo Bluefrog!
Thanks for sharing,
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Bluefrog, I am glad you are doing well on your protocol! You look great! You are making the most out of what you have and that is all any of us can do. I keep reminding myself that no matter what choices we make or what test result I get, I am not promised tomorrow. And my therapist has encouraged me to make these medical decisions based on my current quality of life and that really helps.
Feeling a little stunned today--did not expect my GYN to be so confident in a hysterectomy. He is a brilliant doctor--explain your problem and he just knows right how to fix it--so I should have expected a quick, solid answer from him. Just surprised he took the opposite stance from my MO and didn't need to go over a pro and con list.
So reduction on lefty hopefully(!) the week of July 18 and full hysterectomy July 26th. Last Herceptin August 4th. Should be in full recovery by September, just left with my daily Tamoxifen.
On a side note, 8 years ago I had asked my GYN not to die or retire till he got me through menopause. I got a little nervous when his wife retired but he assured me he was still going strong. I told him today he could retire at the end of the year--15 years early!0 -
Muso
I will share my exprience.
I went the full hysterectomy/oophrectomy route with open abdomenal (TAH)because I did it during reconstruction. It was because of Pal2 and they wanted to do labs and washes to make sure it was all out and negative.
I will say that it was a mixed situation. I feel like I just barely am bouncing out of it 5 1/2 months post Chemo/hyster I have stronger hotflashes and I am doing everything to protect my bones. What really kicked my butt was the AI right after the TAH. That sucked bigtime and the side effects were tough. I am now on Tamoxifen. I finally tracked down the statistics for Breast Cancer and TAH. It only provides a very slight statistical advantage. ( I will see if I can find the article. For me it was the risk of ovarian cancer that resulted in the TAH.
The AI provides more benfit in combination with the TAH depending on the BC. I think it is worth pursuing but I would research it a bit. I am OK with my choice but I couldn't handle the AI.
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Herceptin: 16 down, 2 to go.
I can see the light at the end of the tunnel.
Hysterectomy stories are sobering. Good luck all with that phase.
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Bluefrog-it warms my heart to see you looking happy and healthy. So glad you are enjoying life.
I have had a tough week. It started off with me initiating a meeting with my ex bestfriend of 32 years who walked away from me when my hair was falling out and I shaved my head. At that point it was to hard for her to handle. So she left my life very abruptly and has been a real struggle for me as she was like a sister to me. I initiated the meeting as her son(my godson) and my daughter were graduating on Thursday. I didn't want grad to be the first time I had seen her since August. The meeting didn't go well, and I can safely say our friendship will remain non-existent. So sad really. Until she deals with some issues in her life she will remain in a place that I never want to be. With her exiting my life when she did, it allowed me to open my heart and make room for other friends. Friends who stepped up and have been amazing.
Thursday June 16 was my 1 year anniversary of being deboobed. 1 year survivor of this terrible disease which I am very thankful for. It was also the day of my daughters Grade 12 Graduation. 2 great reasons to celebrate. The kids have been partying for days. I was out chaperoning their grad party until 3:30 am. Feeling a little old and tired today. That is way past my 10 pm bedtime. I was so thankful I could be there to watch a great group of kids have such a fun night. Pretty sure it will take me a few days to recover as we a
re having a big grad BBQ/ball tournament tomorrow as well. Enjoying every minute of it
I think of all of you ladies often. Thankful to have all of you walking down the same road as me and always being so understanding and supportive.
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Dee So sorry to hear about your former friend. I have not experienced this however I also don't have many close friends, and my closest girlfriend has been suffering depression for a few years so I was not surprised if she decided not to come and visit now and then. I'm happy to hear that you've been able to open the door to new opportunity.
YOU LOOK FABULOUS!! beautiful hair and dress, beautiful daughter(s)? Congratulations to your daughter on her graduation!
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Bluefrog & DeeRatz, beautiful pictures! Today is my one year. the following is an abbreviated (& edited) notes I sent to some close church choir friends. ===================================
Recently I came across an old article (1994) http://articles.latimes.com/1994-04-07/news/vw-43399_1_breast-cancer entitled "In Sickness and in Health." Interestingly, the same phrase kept passing through my mind recently.
In Sickness and In Health, a phrase from the marriage vow that everyone knows. One thinks of "I will take care of you when you are old and wrinkled, when your body doesn't work anymore;" a logical path of life. At the wedding last September, I thought: "WHAT IF they started their journey together overcoming the In Sickness part, will they enjoy long lives In Health? Do they get the 'Get Out of Jail' passes for other lives' adversities? In the midst of chemo, that phrase In Sickness & In Health took a whole different meaning.One year seems so long ago, yet feels like just a blink of the eye. The physical part was ok, I actually forgot some of the craziness that happened. Although the memories what the body went thru are fading, there are those Moments-In-Time, Thoughts & Emotions, imprinted in my mind.
I remembered telling choir friend Nancy & WorryWart about the diagnosis before a church service, I remembered Nancy's feisty prayer, and WW got really quiet & took it out on the organ, lots of angry notes. I remembered the moment he busted me in the congregation first Mass after surgery. This is how it went down in emoticons~
My MO asked, "where do you go to church?!" when I told her all the Onco people / Drs at my church (2 Oncology drug developers, 1 researcher at university, a Dosimetrist, an Endocrinologist in choir, + 3 surgeons not in choir) And everyone who let me vent when I had those clueless "What's Happening" freak-outs.< I can visualize Musosgirl & few friends of mine putting their feet up with popcorn> I am in awe every time I recall these moments in my mind. I remembered reading that diagnosis changes relationships, it makes people (not just patient) re-evaluate their lives, what & who are important. Emotions are brought to the surface, Bonds are strengthened & deepened. I remember Kate said she would rather go through the ordeal than seeing the loved one going through with it. It seems then, "In Sickness & In Health" is very different & much more than "I will take care of you when you got sick." And "In Health" is a bigger & important part of the vow; because it requires continuous work. More so, it is a promise to care for one another, in body, mind, & spirit. Of course no one knows what challenges lay ahead; but the work of In Health part of the deal continues. A promise to be there no matter where the journey leads.
Couple months ago, Ron our choir in-resident-funeral-director (oh yeah, we even have that), asked WorryWart if he can get discount for his funeral. "Did you hear what Ron said earlier?" he asked me on our way out after rehearsal. Yes I did. I didn't dare to ask, "Do I get a discount? I promise to work on the In Health part& won't "drop dead" anytime soon. And by God's grace, he would be too old to play when it happens! But if not, can I get a discount? Will you be ok?
============================= (I didn't realized I wrote "will YOU be ok" at the end before I sent it out....) oh well...
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Dee, you and your daughter are stunning!
Superius, my PCP told me that whole In Sickness and in Health thing is hard for a lot of couples. He has told me I am very blessed with my guy for sticking with me through 3 major illnesses now--and this is a Christian doctor in a Christian clinic. And a lot does ride on what happens during the In Health part! Oh what some people take for granted...
My heart has been giving me trouble this weekend. Beating fast and fluttery. It's been acting up the last week or two, but I feel especially awful this weekend. I see my PS and MO this week, plus Herceptin, so I will have plenty of opportunity for someone to check it out--supposed to have an echo next week.0 -
Oh, and Dee, I may just head your way soon. Heat index of 115 here and it's only June!0
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Dee, beautiful pictures--you look amazing! And congrats to your daughter! I'm sorry to hear about your ex-friend. (((hugs)))
The AI (Femara) is kicking my butt...but I don't want to switch to Tamoxifen, which I understand isn't as effective at preventing recurrence, and I'm at high risk. Still, I don't know long I can tolerate the aches and pains. I hope to make it a few years until the highest risk period is over, and then perhaps I will switch. Or I might switch sooner if I really feel my QOL is poor.
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JenPam, can you try a different AI?
I guess we will all be thrilled to see 2018 get here. That should put all of us at the two year mark...0 -
Musosgirl, I could try...but studies seem to indicate that, of the various AIs, Femara offers the best QOL and overall better tolerability. So while I might try that step before going to Tamoxifen, I'm going to wait this out. 2018, here we come!
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Dee, those pictures are amazing!
I guess we have all lost a few friends - and found out who our real friends are. Like you, my life has been enriched by one or two people I really didn't know very well before I got BC but who were there for me and took the illness in their stride.
AND of course, we all have our new friends that we only met BECAUSE we got breast cancer, including everyone in the forum and the people we met at the clinic etc etc. Ain't life strange!
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Dee, you look stunning!
I second what MsBrompton says: I lost a good friend, too, because she started to drive me nuts. Every conversation we had would turn into some weird health thing. I'm going to her wedding this weekend, and I'm seriously contemplating a clean break after that. It's hard--we've been friends for over 20 years--but I just can't deal with it, and one thing I learned from all of this is how to have boundaries. I don't want to talk about cancer--mine or anyone else's--and its treatment all of the time, not anymore. . . .
But, more importantly, my life has been enriched, too, by people I never even knew existed (such as you ladies!) before my diagnosis. One person, a colleague who has become a friend, stands out to me--she's just turned out to be such a cool person, and I'm glad I opened up to her, one day back in November when I felt like garbage.
It's coming up on a year since my biopsy. July 6 is my surgery date. What a hell of a year it's been, and not just in a bad/creepy/cancery way!
Second-to-last Herceptin is Wednesday, along with my first Zoladex. Wish me luck. I'm told the needle is ginormous, and I'm not looking forward to the hot flashes getting worse!
My big update is this: after over a year of horrible writer's block, I'm writing again. I just sent a short story out for review and have another drafted. It feels so good to be creative once more!
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All power to your pen Kate! You haven't exactly written *nothing* in the last year - you've facilitated this forum brilliantly and helped us shape a common healing narrative. THANKS for that and good luck with the writing :-).
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