TRIPLE POSITIVE GROUP
Comments
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Jennifer - Sometimes I would wake up at night and feel awful. I would ask my husband to hold my hand and just tell me everything would be alright. I think he didn't know what to do or say and after I asked him to just say things like that, to just sit there with me, it helped. (((hugs)))0
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jennifer tell your husband he can call the ACS or check out the link below. They have support for caregivers too. I'm sure he has no idea how to handle this… who would.
http://www.cancer.org/Treatment/Caregivers/index
24 hour hotline: 1.800.227.2345
ALSO: Helping Children When A Family Member Has Cancer: Dealing With Diagnosis: linky
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jenn i know its so horrible feeling crappy and trying to hide it from our kids. I found this so tough. I didnt throw up but the nausea was unreal. I tried several anti-nausea meds to find the combo that worked..Have you tried drinking those meal replacment drinks like ensure? they were the only thing i could get down durning FEC. I passed out one morning because my blood sugar was so low so my hubby made sure he brought me one in the morning before he left for work. I think this has been said but make sure you are taking a laxative because those damn pills constipate. That was hospital visit #2 for me
tonlee so alloderm and thats it on the radiated breast? no diep or anthing else?
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jennifer - I had a reflux surgery in '95 that doesn't allow me to actually throw up because of the mechanics of the surgery. I did dry heave after chemo though - If I could have thrown up, I would have. This is how I figured out the Zofran did not work. It took three tx before I figured out the right combo of anti-nausea meds to take. I think there are a number of ladies who were nauseous enough to throw up. I am sorry this is happening to you with little ones - it has to be so hard.
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Jenn-thanks for the twitter feed.
Bcbarbie-I am going to look at that tea. Things are much better now, than goodness.
I am still really sore, but the low grade temp has dissipated, I think. That, or I just quit taking my temp every hour. Lol.
Rozem-I think dance transfer had the full fat transfer. When I researched it, and I really wanted it, I think you have to stay fairly small. And the main doc that invented it, Dr. Khouri's, out of Miami, hates alloderm. I had a long conversation with him. I did not do that because no one in Indianapolis performs it that I could find.
However, I have had fat grafting twice. The first time it was to fill in around the area where I had an infection and the skin was thin, and also to beef up the area in general because we had to use a slightly smaller implant due to the thin skin area. The one last week was a lot smaller, mainly to beef up the upper area and fill in a couple spots. I think I am out of usable fat. It is really sore this time, but they look good and are soft.
There is a dr. Trott in California that fills the TE, then starts reducing it and putting the fat in, I believe.
On the lat flap, isn't Jennt or someone having a muscle sparing one? I had never heard of that, but it sure sounds good.
Good luck on your surgery, Jen. I have a friend having a uni tomorrow.
Whoever said they had to settle In For a long haul is certainly correct. I was just thinking that by the time I am healed from this last surgery, even though it was a vanity surgery and not required, I will be just short of two years since my identifying mammogram. Of course it was three biopsies and two months later before they found it.
Newbies-from one who sent herself into a panic disorder with fear, stress and intense research for two months, take a breath. You have time to make decisions, plans, etc, and while none of it is good, in hindsight, many of my fears were fairly unfounded. The things I worried most about didn't happen, and the things I didn't even think of, did. Lol0 -
Jenn-thanks for the twitter feed.
Bcbarbie-I am going to look at that tea. Things are much better now, than goodness.
I am still really sore, but the low grade temp has dissipated, I think. That, or I just quit taking my temp every hour. Lol.
Rozem-I think dance transfer had the full fat transfer. When I researched it, and I really wanted it, I think you have to stay fairly small. And the main doc that invented it, Dr. Khouri's, out of Miami, hates alloderm. I had a long conversation with him. I did not do that because no one in Indianapolis performs it that I could find.
However, I have had fat grafting twice. The first time it was to fill in around the area where I had an infection and the skin was thin, and also to beef up the area in general because we had to use a slightly smaller implant due to the thin skin area. The one last week was a lot smaller, mainly to beef up the upper area and fill in a couple spots. I think I am out of usable fat. It is really sore this time, but they look good and are soft.
There is a dr. Trott in California that fills the TE, then starts reducing it and putting the fat in, I believe.
On the lat flap, isn't Jennt or someone having a muscle sparing one? I had never heard of that, but it sure sounds good.
Good luck on your surgery, Jen. I have a friend having a uni tomorrow.
Whoever said they had to settle In For a long haul is certainly correct. I was just thinking that by the time I am healed from this last surgery, even though it was a vanity surgery and not required, I will be just short of two years since my identifying mammogram. Of course it was three biopsies and two months later before they found it.
Newbies-from one who sent herself into a panic disorder with fear, stress and intense research for two months, take a breath. You have time to make decisions, plans, etc, and while none of it is good, in hindsight, many of my fears were fairly unfounded. The things I worried most about didn't happen, and the things I didn't even think of, did. Lol0 -
I was dx'ed two years ago today - fluff you are so right - it is settling in for the long haul. Still have fat grafting to do after the vaccine trial is done in Dec. There have been surprises along the way, none of them particularly good, except for the warmth and support of you ladies - who were once strangers but now feel like friends. Thank you all!
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Jen, I threw up. Force yourself to dryink. Eating is good too, but you MUST drink. I ended in the hospital from throwing up and the D. It is hard to force yourself. I also started to take ginger tablets in the morning.but you have to take them every day, even when you don't feel sick to make them work. My onc gave me compazine and that really helped. Also the steroids helped. Much love.
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Jennifer404, the pressures of cancer and chemo are taking their toll on my family as well. We dont want to do this to them but we have no choice. My teenaged daughter's been acting weird. She's one of the sweetest but she hasnt offered to accompany me on chemo, ever. She always stays locked up in her room recently, and i feel like she's even avoiding me. Hubby is distant most of the time. I think it's their way of coping.
I dont know what else to say, but just to let you know you're not alone.0 -
Jenn, im sorry you're feeling so crappy. I had such stomach problems on AC and zofran and compazine didn't work. After the horrible AC #3, they gave me Emend which worked much better. I also found that drinking ice cold Crystal Light lemonade helped for some reason. Water made me more nauseous. Luigi lemon italian ice also helped.
And i can't find the link, but I know there is an organization that sends free house cleaning service during chemo. Maybe someone else knows?
Hope you feel better soon - and I know how bad you feel about your kids seeing you sick. I didn't believe this at the time when people would say it to me, but kids really do move on quickly. Last fall is like a distant memory for my kids, and I now see that my cancer wont define their childhood like I feared it would. Kids really are resilient, and they will be so proud of you for how strong you are even if they don't understand all you went thru until they are older.0 -
Jackboo I didn't see your posts either because somehow you got blocked. Please PM me. I've been sending you messages. Not sure if you got any of them because you were blocked.0
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Solt and Roze,
I had a MX with "immediate" reconstruction. Meaning, the TE was placed, and alloderm was used to help hold it in place. Then I swapped TE for implant. That's it.
My PS said women who are active need their muscles where they are....now I don't know if he meant SUPER active, because he was talking to me, but that's what he said.
One of the older ladies in my BC survivors group (the only one that had reconstruction!) did the TRAM flap for both breasts. Something I didn't know....since she's having problems a couple years out....they have to "undo" the TRAM. And when they undo it...they REMOVE THOSE MUSCLES!! They can't be placed back in the ab because they've "stunted" or are basically too short once made in a foob.
I did not know that once a muscle is used for a foob, if there is a problem it is removed. That is almost as dishearteningary to me as LE. If I couldn't get implants, I'd go flat. Boobs are not worth deforming the rest of my body over...imo. (I know everyone is different) And they certainly aren't worth the long term problems ...
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Jenn,
So sorry to read you're sick. That stinks.
Hope you're feeling better this morning. I never threw up, but had quite a bit of nausea. My Onc prescribed 2 meds, zofran and compazine. One to take on schedule, the other to take as a "break" through if the first wasn't cutting it.
He also told me if I threw up for more than 6 hours to see him, or go to the ER. It is very easy to get dehydrated while on chemo. Very easy.
Please keep us posted.
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SpecialK, I'm glad you are still NED! Woot.
BCBarb,
Cancer affects every family. I didn't realize the toll it took on mine until I was a year out of tx. But you know what? Once you're on the other side of tx, and the family sees you aren't going to fall over dead in the next 15 minutes, it falls back into pace. At least my family did. I wondered if we'd ever be normal again....but it does come.
It crystallized for me when my husband started traveling again with his job, and my kids started giving me grief over homework, chores, etc.
They held their breath for 2 years.....and on the exhale, things pretty much are back to normal.
All that to say, hang in there. In the midst of tx, it is difficult to see the other side. And even when others told me this, I couldn't see it. I thought, well sure that's great for you, but that's not how I roll.
But here I am. On the other side of tx, a year from last Herceptin, and life has picked up right where it left off. Almost EXACTLY where it left off. (The only thing that has really changed is my outlook on it.)
Your life is waiting for you. Hang in there.
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Jenn - hugs to you - hope you feel better soon! I found Ensure Protein Plus drinks to be quite helpful in keeping my nutrition up when not much else was going down too well.
Yes, I am the one who had full fat grafting done. I had two procedures done (one at the time of BMX, the 2nd one a few months later). My recon was interrupted b/c I had to have radiation and chemo, so I am a small A cup. I am debating whether to go back and have additional procedures done to get larger. It is a big investment of energy (Brava wear, multiple procedures needed) and not without risks, as is true of all surgeries. However, I am happy with my result (although small - that's what I'm not 100% happy about). It is very natural looking (esp. on the side where I was able to have nipple sparing; most docs have been unable to tell I had surgery on that side).
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well said tonlee! a few months after chemo my 12 yr said "mommy, you must be feeling better because you are yelling at us again"
so yes, life does return to normali asked about alloderm and they said no on the radiated side, so frustrating because obviously from your experiences it can be done. I am going to request a consult with him again next week and see if i can get him to do alloderm only and i will accept that the result may not be optimal
i had heard fat grafting to build the breast does take a long time but the results are excellent
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Roze,
Yes. I did have rads. A lot of rads and did it with Alloderm. Granted, when the PS placed it, the BS was pretty sure it wouldn't be in my nodes and therefore I wouldn't need rads (he was just guessing because they refused to give me scans). I don't know if they would have risked it if they knew about rads going in....still, I have a great result.
I think since we are the ones taking the risks, we should get to decide, not the Docs.
Good luck...and let me know how that conversation goes!0 -
Tonlee I was just like you. When I first went to see my PS we didn't know if I would need rads… actually didn't know I had to do both but rads was a real probability even though I didn't end up getting it. I told my PS that if the implant failed then I would go without. I didn't want anymore scars on my body. I too was thinking what if they did the lat flap and it failed? I would be so devistated… I have a nice back. Also I now know I need that muscle. I found out later my PS really doesn't like to do flaps. I really think he's all for persevering/restoring the body but not at the expense of another part of the body.
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Omaz no I don't grow pears. Mmy friends all call me pearlady, because I love pearls and am known for always wearing them. Well not always, but quite a bit. Thanks again for the article. I am going to re-read over the weekend as there is so much info there. I have a consult with my Dr. next week, and the article is helping me to formulate my questions.
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pearlady - How funny - I saw pear-lady but it's pearl!0
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Jenn I'm so sorry that u feel so sick and I'm sure u'r DH has no idea what to do He's in this maze with u just not in the same place. And then u have young children which has o be so hard on u;I can't give u advice cuz I've had mine much older and wasn't responsible for anyone and lived alone. So I had it much easier than all of u with families. I hope u get the right combination of meds to help u thru this.
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The site for housekeeping help is linked below:
http://www.cleaningforareason.org/
I did not use it but I think it is individual housekeeping companies across the country that participate so it is available in lots of places.
tonlee - Thanks! I am pretty happy about it too! I can't believe that it has been two years already but it is a little easier to be calmer as time goes on and still NED. I tried the frozen Fage/PB2 for hubs - he likes it better unfrozen! Of course, just like a man, he has reached his weight goal while I am still working on it. I have plateaued, but have not been very discliplined, not bad, just not as aggressive. We have been at a lot of Buc's, USF Bulls and TB Rays games lately - not very good food in ballparks! The good news is that I have not gained any weight, so I can take it off and it stays off if I am sensible. Going back on the "clean" diet and stepping up the exercise - I am trying the Juven - will report in to you on how I do with it.
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Sounds great SpecialK! I like it frozen, but I guess everyone is different. I eat it everyday.....lol.
My Commissary has been out of PB2 for two weeks.....the word is out and it gets scarfed up FAST!
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BC Barbie , Jenn and indeed to all of my dear forum friends..I am so sad for you and for what your families are enduring. Especially those with children at home during your struggles with treatment.
I repeat....Just try to remember every day that despite the terrible time you have had and many continue to have since DX...the future for women with breast cancer especially Her 2 pos bc has become much more optimistic in just the past few years. As Ton Lee and others who have gone before say there will be better times.
Learning to live meaningful lives without thoughts of recurrence clouding our psyches daily may just become the most serious challenge we face.Heads up to Jack boo. My best friends are from Yorkshire England and one is a former professional musician. They sent me a link to a wonderful Yorkshire lass named Kate Rusby's music . As I went through treatments I played them and a few people heard and found the music hauntingly beautiful as did I.
Hope the link works. This is just one of my favorites .It's on you tube and is titled "Falling ". To all of you girls..."my wings" this past year....
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I had my last Herceptin this morning!!!
Getting deported on Weds!
Woo hoo!0 -
Melser congrats. I can't wait to get my port out!
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Melster - whoo hooo indeed!!! Congrats.0
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Hi everyone
Back with it after a nasty migraine. Was lucky to have Iago to talk me down. Ashla: you are so right about dealing with the fear being our biggest obstacle but we do have each other to lean on. Thanks for the music too.
Melster: You are done with Herceptin- yeh, whoop, whoop.
Tonlee: totally random question- what are you hanging onto in your member picture? Ive been curious about that in ages. There was another lady (forget who now) who was waving a lightsaber from star wars. Lol!!!!!!!!
Hope Jenn is ok. Lots happening and to catch up with.
Liz
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melster, Congrats-- I have 6 more herceptin to go.. Finally an end in sight...
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http://www.youtube.com/watch?v=e7iaq5ZOcT0