The Chemosabe March Cruise
Comments
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Miss S - hopefully no news is good news. Prayers for a great report!
Patti - Yea! So glad your report came back B9 and that you are feeling fairly well. Now - don't go overdoing!
Today is the day I would normally feel extremely blech after tx, but so far - I am feeling fine! Hopefully this every week tx will work out for the best!
Has anyone heard from Angel lately?
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Also - how about Taurie?
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HI Ladies,
Just checking in...spending most of my time now on the rads group and the triple negative group...miss all of you though...what do you think of this new format? I had a bit of a hard time figuringhtings out...but now it seems ok.
Finshed up rads last week and now have developed a lovely thing called radiation mastitis...2 weeks of Keflex should clear it up but I am so ready to feel 'normal' again...whatever that is!!
Love,
Holly
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Ok I'm freaking out here. What on earth have they done to the place? I hate it......lol It's much harder to find anything here. And where do I add my avatar again? God it's lonely out here in cyberspace...hehe.
Ok just checking in to see if anyone is still around and I see that we've just about all gone our own seperate ways or to new threads now.
Personally I'm feeling ok but still fighting my stupid infection I've had for months and months. I started on my Arimidex a few weeks ago just about the same time I started retaining water for some reason. As Dawn calls it I feel like an Ooompa Loompa now and can't even see where my ankles leave off and feet begin. I feel like if you stuck a pin in me I'd flood the Colorado River right here in my living room. Lasix doesn't seem to be doing anything and I went off the Arimidex for 2 weeks to see if that's what was causing it. Well it's been 5 days now and I'm still like a water balloon so wondering now what's really causing it. The Dr. ordered blood work, a new EKG and Chest X-ray. Don't really figure any of them will show anything though. I just can't figure this out. I'm 10 weeks out of chemo and having all these problems while I breezed right through my chemo.
I'm just now starting to see some hair growth and when it first started the hair was fine and clear. Almost like no pigmentation in it. Well now it's finally starting to turn a bit brown but just enough to see a 5 o'clock shadow on my bald head. I thought I'd at least have a head of hair (even though short) by Christmas, but at this rate I don't think that's going to happen.
How the heck is everybody?
Maybe I'll try to find the rads thread and see if any of you are still around there.
Love ya all
Angel
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Oops forgot to mention. I've been swamped the past 3 weeks clearing out my collection of Dept. 56 Snow Village and Christmas in the City collection. Did about $8,000 in sales on Ebay and have been working day and night boxing, packing and shipping. I'm about 80% done and looking forward to the last week. That's why I havn't been around much.
Angel
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Jacqneil....go good to hear that you are not experiencing se's. Prayers continue.
Holly and Angel nice to hear from you. Angel hope all your test come back fine and that you get rid of the water.
Hope everyone has a nice week.
Nancy
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Angel, good news about yr ebay sales! the money, not the work, lol.
sorry to hear about the water retention. my left foot still swells from time to time, makes wearing sneakers a bit dicey.
i've lost 6 lbs tho! have been working out about 4x/week. my goal is 6x/week, but baby steps. progress, not perfection.
i check this thread, and i also post on the Aug and Sept rads threads (i started late Aug), and some of the tripneg threads.
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Hi, y'all -
Patti - late, but heartfelt, congratulations on your benign results. Do you think we will ever get over holding our breaths everytime we have tests from now on?!?
MissS - any further news from you?
Jacque - I am so happy for you that the new weekly dosing seems to be helping to minimize the SEs you were dealing with. Keep us posted!
Holly - Alright! done with rads! Is your mastitis responding to the Keflex?
Angel - wow! You made some major moola on your ebay adventure! Sorry you are having to deal with so much edema. I can empathize. I lost my ankles for weeks and weeks - and my toes resembled Vienna Sausages!
I tried HCTZ at first, then moved on to Lasix - seemed to be of little use, either. Then I was late picking up my refill and I noticed it was starting to get better - hmmm, coincidence? Now they only swell if I have to be on my feet a lot and frequently in the evenings if I've pushed myself. I have a friend here in San Diego who finished chemo about the time I did who is up to 120mg/day of Lasix and still has edema. I got a kick out of your "breezed right through chemo" remark - how quickly we forget!
Nancy - good to hear from you, too! How are things in your life? Beginning to get that fresh smell of autumn in the air in the evenings?
Terri - working out 4x/week during rads is fabulous! Your body needs time to recover both from the workout and the rads you know, so wait on the 6x/week until rads are history. Having lost six pounds already shows you are doing the right thing. Good on ya, girl!
I'm just trying not to go stark raving looney before my BIG surgery in two weeks, otherwise, nothing new around here.
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Lisa, thanks for the advice. i really don't enjoy exercising, so any excuse to stay at the 4x/week is fabulous!
here's my current conundrum. since i'm a tripneg, it's all about the nutrition and exercise. which eating healthy is fine w/me. but if i do have a regular Coke, or a piece of cake, then i think, "Is this going to cause a recurrence?"
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I know what you mean Terri - about the diet,exercise and triple neg thing...I've gained back 12 lbs of the 30 I'd lost during chemo...and am totally freaking out...figure it's goign to be all my fault if I get a recurrence....then I get anxious, then I say to hell with it...might as well have that glass of wine and chips and cheese and ice cream and.....
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Hi you guys,
I just noticed the avatars are back! And Angel, you look like a movie star!! Gorgeous.
I'm stressed because I'm going for my first check up on Wednesday. I don't know what tests will be ordered, but I'll let you all know once I know.
You know, Terri, I don't know how much exercise is enough! I've been doing 40 minutes, 4 times a week and combined with my Kinders at school, I'm bagged! Plus, I'm trying to stay on my WW program and watch what I eat. I may have a glass of wine once a month (I'd rather eat my calories than drink'em!), but are we always going to be second guessing ourselves? I keep asking the Lord to give me peace, because I think worrying about things causes more stress and who knows what stress does?! Maybe I'll eat some chocolate.
Christine -
holly and angel, love yr new avatars. i'm thinking of changing mine back to my with-hair photo.
christine, you are so funny. just make it dark chocolate -- it has anti-oxidants!
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Christine - good luck with your first check up on Wednesday. My onc. only ordered basic CBC with diff. and liver function. Then he said he didn't need to see me for six months!
I said I thought it was every three months for the first year and he replied that guidelines are 3-6 mo. and since I was node neg. and will be having a bilat. mastectomy, as long as I am feeling well - six it is. Oh well. I'll be interested to hear how different your experience is.
Holly - no, it is not going to be all your fault if a recurrence happens. Don't even think that way! I agree with Christime, that kind of stress is far worse for us than any ice cream!
Just like w/ Terri with her occasional soda or piece of cake - that doesn't undo weeks of good food decisions. I believe that a balanced, healthy diet of moderation, heavy on the fresh veggies and whole grains and lower in fats is what has generally been shown to be helpful for triple negs. And it's no guarantee! It's just a couple of studies based on self-reported consumption (which is notoriously unreliable) which seems to point to the conclusion that it may be helpful for triple negs. to make these changes. But it would be helpful for all adults to make these changes to have longer lives, right?!?
I'm a triple negative, too. But I ate well (no red meat, no fried food, no fast food, hormone-free dairy, free-range chix, wild-caught fish, organic fruits and veggies, lots of whole grains - alla dat stuff) for years before my diagnosis. In my case, genetics won out (BRCA-1). But I'm still in the habit of eating that way - I'm not suddenly going to get a craving for Krispy Kreme. I do eat dark chocolate now and then. I do have wine maybe once or twice a week, but I have a healthy liver so see no reason not to enjoy it and reap its benefits.
Now, excercise - cancer has taken that away from me. I have lost all of my chemo weight, but I am extremely deconditioned. I used to lift serious weight 4x/week (deadlift 220lbs. for reps, squat 190) and walk 2 mi. 6x/week. Now, most afternoons I need a nap.
I have chemo-induced neuropathy in my toes and my fingers which makes walking discouraging and lifting problematic. I still do my yoga with some regularity, so my flexibility has not been lost.
And I know, in my heart of hearts, that I must start somewhere with my strength training. It's what I love. But I remember (Lord forgive me) pitying the spandex set with their tiny pink dumbells as I loaded the big plates on my bar. Now I know I need to start over with those 5lb. dumbells and an empty bar. This is part of my new normal.
And I'd better go do some of that today, because two weeks from today I'll be in surgery and then I'll be starting all over again on physical restrictions for weeks and weeks.
Thanks you guys. for letting me rant and have a little pity-party/self-talk session here.
Lisa
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Lisa,
I actually did breeze through chemo with only 1 se after the first TAC. I've really had more problems since it's been over than I did during. I used to feel guilty saying anything because so many here were suffering. But that's ok; it's payback time now...hehe. Oh and BTW my toes do look just like Vienna sausages and if they look at me crossway again I'm gonna eat one.....lmbo
When my appetite finally went down to practically nothing I went to the onc. feeling pretty proud of myself knowing I had lost at least 5 lbs. Well NOT!!. The nurse told me I had gained another 6lbs. I said "How on earth can that be possible". Well guess what; water retention of course. Now that I'm blown up like a balloon or oompa loompa I get weighed for them to tell me I lost 6 lbs last week. What the Heck?
Keenie
Movie star not hardly. I actually didn't have my pic of my av stored and that's an old pic that was on the pc from wayyyyy back, but I'll take anything I can get right now since I feel and look like crap in reality........hehe
Take care all,
Angel
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Angel,
You look hot!! I'm sure you don't look like crap now, either!
Christine ;-) -
Hi guys,
Just checking in. My doctors weighed in and decided a mastectomy was the only choice for me - so that was done last Thursday. I'm mourning the loss of my breast and trying to deal with the emotions of it - my feelings about my body and dealing with my husband in regards to my body (I just don't want him to see me like this).
I got my port at the same time which hurt more than the mastectomy. When I had the neo-adjuvant chemo, the combination of Taxotere and oral Xeloda wasn't so bad and I only had 4 so I didn't need a port. This time I'll be getting AC which I guess causes skin problems so a port was required. Anyways, thought I'd get the port placement over with at the same time as the mastectomy as opposed to coming back for another surgery on another day.
I will be starting chemo again (ACx4) in October followed by 5 weeks of radiation and finally reconstruction. Now I'm hearing that reconstruction can be delayed depending on the radiation. Now why didn't anyone tell me that before?
Anyways, one day at a time...
Hugs to all,
Lisa
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Gosh, Lisa, they got you in and out fast for that mastectomy. I am sure it will take a while to adjust emotionally to all that it means to your mind and body. {{{hug}}}. Smart move getting the port in at the same time - only one anesthetic, only one healing. Yep, mine hurt like a bitzh too - fortunately, they come out much easier.
Here's to a Sept. of healing and gaining strength before you start back on the Chemosabe Cruise again. We'll be here to help make sure it's smooth sailing.
You are a strong, beautiful, and determined woman and you will see this battle through, you are just facing a few extra skirmishes between you and ultimate VICTORY!
Lisa
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Lisa with 3 boys.....Hugs and prayers being sent your way for your recovery. I agree the mastectomy is much less painful than the port but good for you getting them done at the same time. Talk to your husband....I'm sure you are both dealing with the emotions of this journey....remember he married and loves YOU not some body part! When will you start the AC? Be sure to drink lots of water the day before the day of and for a couple of days after. We will be right here for you, holding your hand getting you through this part of the journey.
{{{{Lisa}}}}},
Nancy
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Hi Lisa,
I had 4 rounds of AC and so if I can give you any advice, I'd love to help. I agree with Nancy about drinking lots of water and flushing the C drug out of your system quickly. You'll have lovely orange pee for a few hours each time too! I didn't have a port and so they had to push the Adriamycin really slowly with lots of saline and then my skin didn't hurt. But, my veins are pretty much shot, so having a port will be much better for you.
I think having the reconstruction will help you alot. My friend went through her reconstruction surgery the week after I was dx last December and now, 8 months later, she looks fantastic! You've been through so much already - give yourself some time to heal inside and out.
I had my 3 month check up today and my onc doesn't want to see me for - TWO years! I was kinda shocked, but she just wants me to have my family doc monitor me every six months and have my yearly mammo. Then in June 2009 I'll have a bone density test and we'll decide if I should switch to an aromatase inhibitor. No blood tests. Nothing. After being so micro-managed for the past 6 months, I feel kinda like I'm working without a net! But, thanking the Lord for His goodness.
So, thank you ladies, for praying for me today. This Cruise has been such a blessing to me. And, even though I'm stepping into the next part of the journey, I'm still going to need you guys!
Christine -
Lisa,
Good luck with the recovery and the healing process. I chose not to have any reconstruction and am so happy I did. Hubby could care less. Just remember that it's mostly more in your head than it is in the husbands I'm sure. Like everyone said he married and loves you. Maybe a good heart to heart would let him tell you how he really does feel.
Angel
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Christine,
I am so amazed that your onc is not going to follow you more closely. Will your reg. doc do blood work to check tumor markers, etc? Usually, people are seen every three months for the first year following treatment and then every six. I don't want to be an alarmist, but I am just flabbergasted! I want you to have the best of care!
Lisa,
As others have said, you have been through so much lately. It takes time to fully accept all that is happening. I had the same feelings as you, but we worked through them. I will be honest, I had reconstruction (by a leading surgeon) and am not happy with the results. I wish I had just stopped at the mastectomy. I also know many women who had reconstruction and are thrilled with it. I pray that you will too.
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Thank you for all of your kind thoughts - I've been following all of your converations since March, but with having the neo-adjuvant chemo, it's hard to relate until you actually go through it - lumpectomy or mastectomy. So now I know and understand so much more than I did when this cruise started.
Anyways, I'm here for the long haul, though I might see if an October chemo group starts or start one myself, especially since I've been through it once already ;-) I'll be checking the radiation board since I know that's in my future, too.
Love to all,
Lisa (3boys4me)
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Hi Jacque,
Yes, I'll be asking my family doc about the blood tests. I'm thinking that because I was Stage 1, they are not watching me quite as closely. I, though, will be all over it! My family doc is a good friend and neighbour - he even prayed with me and my husband the day I was diagnosed. He'll keep a close eye on me. I see him on Sept. 28.
Thanks for the advice - I know my gf, who was Stage 2, went in for a CT scan and bloodwork every 6 months. Maybe it's different here in Canada . . . I'll keep you posted.
Christine
PS: Does anyone know how to find the cute icons on this new format?! :-) -
Do you mean the happy faces?
They are on the tool bar at the top where you write your post. Just put the cursor where you want the face, click on the happy face and choices will pop up.
Did you all notice there is a spell check now, too? I keep forgetting to use it!
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Hi everyone....so good to hear how each one is doing. I am in good shape except for these nasty mastitis which I guess is a common-enough last post-op complication from the lumpectomy. The second round of antibiotics seem to be making a difference. Just still so low on energy and stamina...but generally feeling great both physically and emotionally.
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Okay Jacque! I'm losing it! I can't seem to find the tool bar here. Is it because I have a Mac? Or a chemobrain?!!!
Help me . . .
Christine -
Hi Ladies...nice to see everyone again. I've been so busy with normal life that it hard to keep up with this. I don't like the new format here much but I guess I'll get use to it. I'm off to Hell, Michigan this weekend to a car show. What kind of car show you ask???..well a hearse show, what else would be in a town called Hell? I have a hearse that I bought after my treatment. I love Halloween and cars so it was a perfect fit. There should be 40 supped up and even a ghost buster one there. This spring mine will be painted with flames on it and a "in your face cancer" sign on the back. It's sorta my way of saying HA..I made it cancer. Hope you all have a great weekend!!! Rosebud
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Hmmm - Christine - I don't know! Maybe it is because you have a mac. The toolbar on my machine is just right above/connected to where I am typing right now. Right in the comment box. There is a B, I, then icons for indent, etc. You might write and ask the moderators what gives. Maybe there is something else you need to do?
Hi Rosebud! It is good to hear from you! I have been checking your blog and figured you were just too busy to write.
Have a good weekend, everyone!
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Hello lovely BC sisters,
Just as I thought I was coming to somewhat of an end to my cancer treatments (I was just fishing rads, had finished chemo, and had 9 more months of Herceptin), I got a bombshell dropped in my lap.
When I went to get my Herceptin, I was told by my onc that my LVEF had dropped from 67% in March to 36% in August. I was absolutely stunned. I had some of the warning signs, but all of them could be attributed to SE of my other treatments I had going on.
When you have that significant of a drop, you are taken off Herceptin for good (normally). I was very distraught to know I couldn't get my life-saving Herceptin infusions! After mourning over that for a while, I realized I might be in some serious trouble with my heart.
In the last two weeks, I have seen the cardiologist twice and had many tests run. On Thursday, I got more very surprising news. The cardiologist walked in the room and greeted me with, "You had a heart attack." HUH!?!
About three weeks ago I had what I thought was an asthma attack. It was pretty bad and lasted about 20 minutes, but then I seemed okay. At the time it was happening, a heart attack crossed my mind, but I wasn't having any pain in my chest or down my left arm, so I dismissed it. Wrong move! If I would have gone to the hospital immediately, I may have been able to have received meds that would have prevented permanent damage to my heart.
The doc said he believes that my cancer medicines somehow caused me to have a blood clot that caused the heart attack and resolved itself, because I have no blockages now. So now I am being treated for heart disease and for the 'overall weakening of the heart' caused by Adriamycin, Herceptin, and rads. I need to call the Cardiologist back on Monday and ask him WHAT exactly my diagnosis is, so I can google myself to death learning about it.
My LVEF was 33% on my last test, but he said that was the same difference as 36% and he wasn't considering it a drop. I am now taking four medications and he said our goal is to get my EF back up to 45%. I, of course, am hoping to get it back up into a normal range, but realize that either score will only be kept there with medications.
This entire trip has been such a roller coaster ride! I'm going to end this with the signs of a heart attack, so maybe someone else won't make the mistake I did by staying home!
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It's vital that everyone learn the warning signs of a heart attack. These are:
Chest discomfort. Most heart attacks involve discomfort in the center of the chest that lasts for more than a few minutes, or goes away and comes back. The discomfort can feel like uncomfortable pressure, squeezing, fullness, or pain.
Discomfort in other areas of the upper body. Can include pain or discomfort in one or both arms, the back, neck, jaw, or stomach.
Shortness of breath. Often comes along with chest discomfort. But it also can occur before chest discomfort.
Other symptoms. May include breaking out in a cold sweat, nausea, or light-headedness.
Delay Can Be Deadly
Most persons having a heart attack wait too long to seek medical help-and that can be a fatal mistake. Patient delay-rather than transport or hospital delay-is the biggest cause of not getting rapid care for heart attacks.
People often take a wait-and-see approach, delaying because they:Do not understand the symptoms of a heart attack and think that what they are feeling is due to something else.
Are afraid or unwilling to admit that their symptoms could be serious.
Are embarrassed about "causing a scene," or going to the hospital and finding out it is a false alarm.
Do not understand the importance of getting to the hospital right away.
Some patients are more likely than others to delay. For instance, women, older persons, and minorities are more likely to delay getting help.
As a result, most heart attack victims wait 2 hours or more after their symptoms begin before they seek medical help. This delay can result in death or permanent heart damage-damage that can greatly reduce the ability to do everyday activities.http://hp2010.nhlbihin.net/haac_ram/haac1.ram
Miss S
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omigod Miss S!!! I am so sorry...just when we think we are over the worst...something else comes along. Thank God you are "ok" - that being a very relative term I know. I am sorry about the Herceptin. But am so glad that you don't have heart blockage. We are really very fragile beings. Thank you for beign in touch....sending love.
-Holly
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