TRIPLE POSITIVE GROUP
Comments
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TonLee - Like I said earlier I hesitated to relate my story of family loss because it is such a downer but I know that all of you understand. I don't really tell that story to many others. I appreciate your understanding, both from your current scary situation and the military angle. My husband just retired after 28 years and we absolutely do give up a lot in the form of family relationships when doing so much moving around. My brother and I really pulled together to help our parents when they were sick and dying and I will always treasure our ability to team up and care for them in the best way possible. I was the business one and he was the flowers/candy/jokes one and together we made one perfect child for them. My husband comes from a big family but the majority of them are doctors and nurses. They were all very hard hit by my diagnosis - they tend to deal with bad medical news with the ostrich mentality. They have all been supportive but I notice that as time goes by they call less, or they just talk to my husband and not me so much.
Nora - Bile duct cancer is rare. The bile duct is between the gallbladder and the liver and it makes it hard to diagnose, especially when it was wildly spread like his. When he was diagnosed I frantically looked for a clinical trial for him but he was clearly so advanced he was not willing to be treated. He had a different approach - he was content with his life, felt satisfied and ready to leave. Not me - I'm going kicking and screaming. I saw him about two weeks before he died - absolutely the hardest thing I have ever had to do. Hands down. He was so ill, he had not been able to eat for more than a month, was being fed through an IV because his feeding tube had gotten infected. He had tumors from esophagus to the colon. He was the epitome of grace - so accepting of what was coming. I knew I would never see him again, it still breaks my heart. I was frightened when I was first diagnosed because that is the age he was too, I thought maybe it was a sign and I also suffered from survivor's guilt. Especially because I had been so lucky with the mass in my calf I had to balance my feeling of suddently not being so lucky anymore! It was kind of like a karmic smackdown but in a way I was OK with it. My sister-in-law (his wife) took it really hard because besides her children I am her only link to him. I am the only one who can tell her stories from when we were kids. She was one of the last people I told about my BC because I knew it would devastate her. She lost her Dad 4 months before my brother so she had a lot to deal with too. Sorry this post is so long - I am still working through a lot of feelings about it!
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Great advice! Thank you all.
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TonLee - How did it go today?0
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Windlass,
I'm sorry about your hair. I know you are disappointed. Perhaps cut short, the cold caps will work better? I don't know anything about them, but I certainly hope you can manage to make them work for you.
SpecialK,
This is a good place to help work through those feelings because likely there is someone who has experienced something similar. Work away.
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Lago, I used some revitalization ideas from Rogers Park while working on a corridor redevelopment plan for a city near me.
I'd love to see pics whenever you post them
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Lago, I used some revitalization ideas from Rogers Park while working on a corridor redevelopment plan for a city near me.
I'd love to see pics whenever you post them
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Omaz,
It went exactly as I predicted.
He listened patiently. Felt the lump. Said it was nothing. Looked like it was vascular (a blood vessel) and part of the cording. Keep an eye on it. If it starts to grow let him know.
I asked for a referral to an LE specialist. He said it isn't LE, but he would send me for an evaluation.
Gave me my scrip for Tamox, said he didn't need to see me every month anymore.
Bye.
~sigh~
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TonLee - sigh. Guess he has never heard of axillary web syndrome with cording. Well at least you got an evaluation. How do you feel about things?0
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I feel ok about it I guess. I wasn't shocked that's for sure.
I think he's happy to be "rid" of me (though I take Herceptin until Dec).
I think I'm more worried about this Tamoxifen. Blod clots and thin hair. Grrrrreat. I'm starting it Sunday.
I meet with my RO on Monday and tell him I'm post-poning Tx. That's gonna be U-gly.
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TonLee - I got an upset stomach when I first started tam, if you do try adding a little fat to whatever you are eating when you take the tam. That helped me.0
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TonLee - Thanks for the encouragement. Most people shy away when you start to talk about this kind of stuff because it makes them uncomfortable unless they have been there. I was fortunate that when I was diagnosed I had way too many friends who have been in my position with BC already, and a couple of co-workers who have dealt with family members with CA diagnosis of different kinds. All have been very supportive and kind, as have all of you.
Your appointment today doesn't sound all bad - especially if he feels like the problem is vascular as opposed to another mass. Also, if he was willing to send you to an LE consult even if he didn't think that is what the problem was. When you get to that appointment you may get some better and more specific answers. I have been fortunate that here at MacDill AFB they do not have a military hospital proper and they have to refer off-base for almost everything so you go straight to the specialist. I had mammo/US/bone density and echo done there and that is all.
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Omaz, thanks! We have a big family Easter celebration today so I'm going to wait until tomorrow to start. I really dread it, but at the same time understand it will save my life since I am so ER+.
I asked my Onc what the 3 most common side effects he sees with it in his patients...he said depression?? Well he didn't say depression exactly, he said he often has to prescribe Effexor (sp?)..what the?
The second most common symptom he sees is hot flashes.
The third....THIN HAIR!!!
Great. Just fabulous.
Then he threw in a 4th for kicks and grins...WEIGHT GAIN!!
Kill me now...lol.
SpecialK,
Sounds like you have a great support network. I'm so happy about that. You know I've lived in some pretty remote places, and I have a somewhat abrasive personality, so I've gone years at a time without a circle of women around me. (Though my lifelong friends are only a phone call away.)
Actually the care I receive at the medical center is superior to any I've ever gotten from the AF before. (I won't even talk about delivering my 2nd child, 2 months premature, in interior Alaska in February, in an emergency C-section, with the Army ~shivers~).
My problem is, I've had such crappy medical care for over 20 years I just don't trust it (I've got some horror stories from being told I have cancer, to mixing up my med records with someone else, losing my med records, being cut on and later finding out it was unnecessary and caused more harm than good, not to mention not a year of continuity in over 20 years etc, etc.)
So my immediate response is "I want a civilian second opinion." And all the Tricare approved 2nd opinions are.....RETIRED AF DRS!!!!
All in all, (though they would never believe me if I said it), the cancer center I go to is rock solid. People from all over the country come here for treatment, including civilians.
Unfortunately I came in with all my previous baggage of experience, my somewhat abrasive personality, a penchant for arguing and being stubborn, and well....I'm on the "sucky patient" list.
Which means they can use military dogma to retaliate...I recognize it from my time in the Air Force
But I wouldn't change a single thing so far. And they'll get used to me. Or kill me.
Tomato- To-MA-TO
Buwhahahahaha
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TonLee - for what it's worth, I have been on Tamoxifen since November 1, and I have very few side effects. I have hot flashes - a few a day - but I had those with chemo too. And I suppose I'm finding it harder than usual to lose these 10 pounds that I gained during chemo. I was worried about depression, mood swings, etc. but have not had any issues. I think Effexor is often prescribed for the hot flashes actually. No nausea, no thin hair, no joint pain. Nothing really. Not hard at all.
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Yep, ditto here with no real tamoxifen side effects...I am on it a year now. I put on about 10lbs since being on it, but that might not to attributed to it. I have to work hard to stay thin, but that might be being 44, chemopause etc.
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FYI I was really thin at age 42… like too thin. 117-120 lbs 5'6" By the time I was 44 I started to put on the weight. Before my diagnosis I really worked hard to go from 136lbs to 128lbs. I looked awesome. Put it all back on chemo.
Now even at 136 I'm not fat but I like to be at least around 130. It's just harder when you get older because you have lost muscle and you tend to be less active.TonLee will chime in I'm sure in agreement but you must do a combination of aerobic, muscle building exercises along with eating healthy and portion control. Sorry but no magic secret. It's just harder as we age.
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Yes, muscle (strength training) is the key to keeping a young metabolism.
I have lots of things working against me...hypothyroid (which means my metabolism is slow), tamoxifen (maybe), and age (42). But I work at staying thin...
It's official, despite my legs still retaining fluid, I didn't gain any weight during chemo. I imagine when the fluid and pain dissipates from my thighs I will be a pound less than when I started. It was very difficult not to gain weight during chemo...VERY.
The steroids made me really hungry, all the time.
I counted calories every single day, and continued to work out and do resistance exercises since I couldn't lift heavy because of open wound.
Now on to maintenance!!
(If I ever heal!!)
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I lost weight during chemo... I had that metallic taste terribly, so the thought of food was miserable. I should add more weight training. I play tennis and kickbox. I recently added walking for an hour into my routine...I go with a friend and we go fast enough that we can barely talk...miles and miles!!! I eat no meat, dairy or sugar really... Primarily veggies. I'm 5'8 and about 140-145. I know what you mean Lago about being too thin... I was 125 during chemo. I loved fitting in the small clothes, but knew I looked gaunt. No issue now, lol!!! Tonlee are you sure you don't want to insist on a fine needle aspiration of that lump?
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<rant>
@*&%! I've got a rash on my lower back/side on the left. WTF. I never got rashes before. It just showed up. It's reddish with some blisters. (Not hives, I had that twice before years ago). I put some hydrocortisone on it but now it itches a little. Not sure if it started to itch it's own or the ointment irritated it.
Why do these things alway happen to me on a holiday weekend! This kind of thing is for my regular doctor to diagnose. Guess if it gets worse or doesn't start to improve I'll be calling him Monday.
</rant>
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lago - what have you been doing? anything out of the ordinary? Sitting in the grass?0
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Lago - Hope it's not shingles.
I am on Effexor for the hot flashes. It really helps. No issues with Tamox for me.
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I was dx 3 years ago, but just had an ultrasound and seen a new surgeon (my previous one left). In my appt with surgeon she was reviewing my history and said I was ER/PR and HER2 +, I said no just ER/PR, she said no... you are HER2+ as well that an addendum came through on path report. She was surprised I was not aware and not treated. So she called and left a voice mail my oncologist, hopefully I will hear something on Monday. After 3 years.... I am just now able to get my hair in a ponytail again.... and now more treatments potentially????? Trying to be positive (along with everything else).... but !!!! Cancer sux!!!!
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Hi Lago... sorry to say it sounds like Shingles. I had them last year on my lower back, blister like in a patch, very red.... You need to see a dr. ASAP!!!!
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Leisa - the treatment for HER2+ is usually herceptin which usually does NOT cause your hair to fall out!0
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Well at least my doctor is on call tonight. I got drugs and will see him Monday or Tuesday. Looks like I may have to cancel that colonoscopy on Wednesday. I really hope not.
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What does the doctor think it is?
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I hate to be a downer - but while Herceptin alone doesn't cause the hair to fall out, I think in most cases it is given with chemo like TC or ACT, and maybe sometimes a taxane alone? And those, unfortunately do cause the hair loss. Now, perhaps if you had chemo when you were first diagnosed that makes a difference. I hope for you that you can receive Herceptin alone.
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Leisa. That is very strange that you did not receive herceptin. Let us know if you will be receiving it now. With herceptin alone your hair is safe. It is not a chemo drug and does not have the same side effects. I have finished chemo and now have herceptin every three weeks until august. A slight bit of nausea the day of, but that could also be a mental flashback to chemo time. The herceptin infusion itself is only about 30 minutes. Libraylil
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Omaz my doctor, my BIL (called my BIL first. He's also a physician) & my mom all think shingles. Looking at it today and how it now feels I know this has to be shingles based on the description and photos. It's a little itchy and some minor pain associated with it. It's like a bunch of cold sores on my back. Granted I've had hives… hives are much worse!
Leisa I finished my last chemo January 18th and now on Herceptin only. My hair is growing back nicely while doing Herceptin only. Chemo is what makes your hair fall out.
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Gee,
I can insist all I like...but it's not going to happen. lol They just don't bend to my will the way they should! heh.
Lago,
My husband had shingles once. It was incredibly painful for him. I hope yours isn't. Take care of yourself.
Leisa,
3 years out? I can't imagine they'd give you Herceptin now. But what do I know? That is kinda scary though....hope you get some satisfactory answers.
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TonLee I guess it's a little uncomfortable but seriously with what we've been through this isn't so bad. Actually I'm about to go out and power walk. Hopefully it won't get any worse now that I'm on meds. The trick is to catch it early which I think I did. I just noticed it at noon and was taking drugs by 9PM0
