Illinois ladies facing bc
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Team Illinois Ladies have passed the 6K mark. Now $6,257 raised! 23 days left to go.
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You have a goal of $6969.00......... interesting!0
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Have definitely decided against chemo, but Dr. Prager doesn't seem to want to accept my decision and wants me to bring in my parents to my next appointment. My gastro doctor for the colon perf told her he didn't think it was a good idea in my situation and she didn't like his answer and said that he was not a specialist. I would like to think he is an excellent specialist who saved my life during that time period.
I am a 35 year old woman who does not need her parents to make this medicial decision for her. We(parents and I) talked about all the side effects and all the possibilities of doing vs not doing and they let me make MY decision and said they will support whatever I chose to do. I do have a 32% chance of it coming back...which to me, means there's also a chance that it may not come back. I have to go with my gut and my gut says no chemo.
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HeidiDisney, I do not know your case . I recently found out about success stories of women with cancer and there survival. A women 13 years ago had ovarian and was not early detection, went thru chemo. Two years later she had reoccurrence, brac 1 positive. She went thru chemo again. It is now 10 years later and she is healthy and remains cancer free. She went 95 %vegan, no dairy, lots of fruit and vegetables, sprouted vege's , etc. I know someone else that has had numerous reoccurrences for 20 years went thru chemo, has had children and lives a healthy fulfilled life. I strongly believe that if chemo is an option a women should go thru chemo and take any form of help for the disease that they can .
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HeidiDisney Sorry about the "I want to discuss this with your parents." I tend to agree that at 35 you certainly are an adult. I have to be honest I am losing track of all the people I talk to. Please refresh my memory. Wasn't there an issue with chemo and a family member?
I really think you should talk to 1 more onc. If s/he she says no chemo then I would talk to one more. If 2 out of the 3 say no chemo then your gut is right. If 2 out of 3 say you should at least try chemo then you might want to think about this again. It might even be worth it to make the trip up to Chicago area and get an opinion of one of the oncs from a larger hospital who might be in practice a little longer.
But my question is 32%, OK but what does chemo cut that risk too. Do you mean that 32 women out of 100 will recur/die in 10 years if they don't do chemo? Does chemo cut that down to 16 women? Is there an option to do that chemo that isn't as harsh like CMF (chemo-lite as some call it)?
BTW I have no regrets on doing chemo. I'm not going to tell you that you should because I don't know all the issues but if it's just because your scared then it sounds to me you have the wrong onc.
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Hi Girls....Yes it has been a while since I have posted. I do try to check in and read. Congrats to Adey and Lago on your fantastic fund raising for your walk. You girls ROCK!!!!! I hope to come and cheer you girls on and then meet up with you all for lunch. That's my plan....
I have had so much family drama here...my ds was in the hospital with double pneumonia last week. I was so nervous that I didn't go to work. Just sat in the hospital all day and night watching him breath. Then my mom was sick with heart issues so off the the hospital with her. Who needs to run a marathon when you can run between two hospitals.:) Thankfully both are home now and doing better. As for me I am trying to stay well...away from all the germy kids and staff at school. I am the Lysol Queen at school. I now have everyone washing their desks with wipes! I am trying to get the evites out for the holiday get-together so check your emails. It is Saturday, Nov. 3. So save the date everyone. I hope everyone can come...we really do have a wonderful time. Thank you again Lago for the updated list. You are the best at computer stuff.
Adey... the Chicago Marathon is 10 days away...so I tell myself I can do this. We got our American Heart shirts...I am running for charity for them. They are so cute that I am going to wear it to school. Today I ran with the third graders at gym time. There were so fast that there were some kids who out beat me. Ummm what is their secret. he he
Someone ask the question about MRI's. I alternate my screening 6 months mamo /6months breast MRI. That is what my md suggested and I have been doing since I have dense breast tissue. I only had a lumpectomy. I have more faith in the MRI than a mamo. But that is just me. I hope everone is doing well in their txs. And for those out of tx I hope you are enjoying life...party.
Just wanted to stop by and say hi to all of you...looking forward to meet / greet all the new girls here. So save the date.
Enjoying this great cool weather. Goodbye my hot summer weather...hello cool fall.
BJ
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OK so now it sound like I have 3 friends running in the Chicago Marathon. You guys can figure out about when you're going to pass by Clark & Fullerton I'll be out there cheering you on. Or give my cell to who ever is tracking you and they can call me.
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The 32% is the distant rate of reoccurence over ten-fifteen years. The doctor wants to use the most aggressive form of chemo that is available and with the side effects, I don't feel like it's worth it or worth the chances that it may not lower that 32% very much. I may ask Dr. Prager to reccommend another oncologist and meet with them and get their take on the situation for arguments sake, but I am extremely certain that nothing is going to change my mind about the chemo.
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Dr. Prager wouldn't even talk to you about doing a less aggressive chemo? It's all or nothing?
Remind me again why you are so anti-chemo? Again I'm not trying to convince you. I think you're getting enough of that from your doctor and I'm no MD. I'm just curious.
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In 2009, I had a colon perforation...nearly died/spent three months in the hosptial and still do not remember anything. I was on the verge of liver failure and respitory failure. One of the possible side effects of the chemo(on the handout she gave me) is another colon perf and liver failure...the gastro doctor said that another perf will be a permanent colostomy and that is not acceptable to me because I can not work as a daycare teacher if that happens. I am not willing to go through that ever again.
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Hi all:
Like Blackjack, I post here rarely. The MRI issue is of interest to me as like BJ I get a a rotation of mammogram and MRI every six months and like her, I have dense breasts. Perhaps unlike her, my mammograms NEVER showed cancer. I too trust the MRI as it appears to always shows cancer when mammogram does not not.
With this in mind, would it now make sense to have the MRI and skip the mammogram? I am thinking this would reduce some radiation of testing. Any thoughts about striking out the mammogram and sticking with MRI? I should check with the BS. In the past she just goes along with what makes me feel safe!
On chemo: I think it is all so personal and so I cannot suggest any ideas on how to proceed. I had chemo and found it easy as compared to radiation and I fet good about doing it as I felt I took every step to hit cancer with the few tools I had at my avail. I did not, however, have other health concerns that made chemo worrisome.
I am excited to see so many of you at the Montrose Harbor walk. My daughter and I will be walking.
Susan
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zap: Your insurance may not pay for a breast MRI and that's why the doc's may hesitate doing it more than every other time. I know this sounds crazy, but a lot of docs are beholden to the insurance co's. I.e., some want a PET scan, but the ins. co says, no, CT scan first, etc. I know how you feel, though... I thought I should have had a breast MRI several years ago and the radiologist looked at me like I was nuts because I have dense breasts and have a history of cysts and biopsies.
Heidi: I feel badly for you. Sounds like you've already made your decision.
Lago and Adey: YOu girls rock!
Lago: How far do you like from Southport? My DS and DIL just bought a new place in the 3500 block of Southport.
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I live (or "like") 2 miles away. When I was in grad school I lived on Addison & Lakewood, right down the street. Very nice area but gets busy during Cubs games. I get my hair cut just east of there: 3481 North Clark. There's some nice shops around there too. Let me know when you come to visit but do note I avoid the area during cubs games.
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HeidiD--OK now I understand u'r total reasoning for not aving chemo. Wow I'd be thinking too---What an awful time u had before--that alone is enough to go thru, now this? Whatever u'r decision it will be right for u. Good Luck
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Heidi---I'm sorry that you are in this spot. I hope you will get another opinion. Most of the drugs for cancer tx do have a lot of side effects.....I think in most they are listed as to what is really likely at first and then go to the next group as being perhaps a little less likely and then at the end...the things that generally only happen to an extremely small percentage of people because it is the rarity.
Of course, you have excellent reason to be concerned, but that is just why I would get a couple more opinions. No one can promise you anything, but I think a great many people do opt for being as aggressive in their treatments as they can.....because the more you are able to do upon initial discovery it seems, the better your chances of not having a recurrence very soon if at all.
Gut feelings are good...without the gut feeling of my surgeon.....the second cancer that was lurking under a bruise I had probably would not have been found during my surgery for what was a very slow growing non-aggressive cancer. She saved my life.....but I knew from that, that the second tumor....much bigger and more aggressive was going to call for a lot of work on my part to go even further in doing what I could to assist in saving myself. Choosing what is right can be a delicate soul-searching matter. I do wish you well, but hope you will consider at least one more opinion if not two.
Hugs, Jackie
Big hugs to Bj......glad things are looking much better for your loving family members. Hi to Zap and Karen as well. On to my jammies and some t.v......Long day but I feel good about it all -- just tired.
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Heidi oncs mainly only focus on getting you and keeping you cancer free with of course minimal SE but since you have this special issue you need an onc to really understand why you are so fearful of chemo. Your fear is warranted. I would definitely get 1 or 2 more opinions. Most aggressive chemo, and that's the only option for someone with your issues? Again I'm no onc but I find that hard to believe.0
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Happiness comes from a conscious choice to live life joyfully.
- Jonathan Lockwood Huie0 -
Good morning, ladies! Spending the weekend downtown at a work conference, which will be some fun since DH and I are staying overnight at the Westin tomorrow. Looking forward to a nice dinner at a restaurant my daughter recommended - Socca. Lago, you may know of it since I think it's near your 'hood.
I alternated Mammos and MRI's for my 5 years of monitoring. Like a few others, mammography never picked up my tumor but it was totally defined on the MRI. I asked my BS about only doing MRI's and he was adamant that I continue doing mammos. According to him, MRI's aren't as good at delineating small calcifications - and I did have a cluster that needed monitoring (and eventually biopsied). I'm so glad to have all that monitoring behind me! Except of course, any monitoring I might need for my implants, which I'll discuss with my PS when I see him next. We have a family cruise planned for December, and I decided NO MO' MD appts. until AFTER I get back - aside from my Dexa scan next month. I do have a worrisome "bulge" in my right foob - but it's been there for a few years now, and it doesn't show up as anything with ultrasound, MRI, or even during my last implant swap. So, everyone is assuming it's a split in my pec muscle at that spot... It's kind of annoying.
Kj - My DS and his roommates live in a condo on the 3400 block of Ashland. They love the Southport area.
Heidi - I can only reiterate what others have already suggested and maybe add a little more. Please consider getting a 2nd, and possibly a 3rd opinion. Yes, the ultimate decision is totally yours and yours alone. You have to feel comfortable with the decisions about your body. But, you obviously have a complicated medical history, and the underlying details of why you had your original perforation, the current status of your colon and liver, and the actual risks of a recurrence of such an event, are just some of the many details of your medical history that need to be reviewed by more than just one MO, or GI specialist.
You've clearly already had your share of medical trauma, and it's understandable that you would want to avoid anything like it again. But, this is a big and unavoidable decision, and as overwhelming as it is, you want to come out of it feeling that you were as WELL-INFORMED as you could reasonably be, then, whatever decision you ultimately make will be the right one for you. Good luck to you.
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I'm like Lago, no scans.
Heidi- There is a place called the Block Center in Evanston. They supplement chemo with vitamins, life style changes and such. Going there for my chemo eased my mind a bit. It's very hard, all these decisions we need to make. The best of luck to you.
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Hi Ladies.... i haven't been on here in awhile.... life has been so busy!!! (I love that.... LIFE!)
Anyways.... Lago and Adey and the rest of the team, AWESOME fundraising... i saw Maria's name up there too!!! Way to go!!! I am heavily involved in the Relay for Life so I unfortunately hit my donors hard for that in June, so I'm walking more for the support the cause than anything!
I'm looking forward to the walk with a lot of you and so is my daughter. My aunt is also going to come down and participate.... we're actually walking in the Making Strides walk at the Chicago Premium Outlet mall the Sunday before.... my daughter organized her very own team with some classmates and they are all SO proud of themselves. I'm walking along side them as well!
Welcome to any newbies I missed coming aboard.... these ladies are wonderful! I know I haven't been on here in awhile but I think about you all very often. And brag about you all as well, the wonderful support system I have!
My hair's starting to get a little longer, it sure is a slooooow process, my goodness! I'm walking everyday (except Sunday, that's my day of "rest" HA!!) because I gained 20 pounds during my chemo months and shortly there after.... I'm not "dieting" per say, I'm not a dieter at ALL but I am trying to walk atleast 1-2 miles a day.... so far so good, no weight loss yet but also no more weight gain so I have to be going in the right direction?
Been busy with work and my daughter back in her activities and school. I also had a grandparent pass away last month so unexpectedly traveled to Florida.... it's just been a crazy couple of months.
I hope everyone is well!!!! And I hope to see a lot of you on the 20th!!
Lago, I have been meaning to email you, I don't think I can make the luncheon afterwards.... we have another commitment that evening that I have to get back to the burbs for..... i tell ya, every weekend is "Go Go Go"
Happy Friday everyone!!!!!
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OK...I think I have a new SE from chemo. I have sores in my nose. I've never had those before. They hurt! My husband told me it was probably just a pimple....I don't think so. Anyone else had this problem? This is embarrassing but I have to ask.
Shannon
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I had bloody noses that went on for a bit. I think it was a combination of taxotere and Herceptin that did that but Herceptin is known for that. Once it was warm out and off chemo I had less of a problem. I know I put a little Vaseline up there but be sure not to put too much or too high. You don't want to breathe it into your system… and you might want to check with your onc to see if that's OK. S/he might recommend something else.
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Chemo wreaks havoc on all the "mucusy bits" nose, mouth, entire digestive tract, vag, a hole. It's a pain in the ass! I'm not a fan of petroleum jelly, kinda yucks me out. How about EVOO or coconut oil? L-Glutamine powder, a supplement, helped me some. Good luck!
Hi madmom. (c:
Lago!
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Thanks Rene, that was what I was looking for on the mammogram/mri question.
I too am walking for Strides along with my daughter and am also sheepish about raising money as I have hit so many for other causes. This has definitely been the year for walking/causes. I have had to cut back myself when asked. I feel badly when I do. I did my three mile walk today so I keep up with the rest of you youngn's.
Be well!
Susan
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Can't wait to see all the walkers! I'm lucky. I haven't had to do any fundraising in awhile.
Lago- Those line dancers are creeping up on us!
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Shannon~ I'm wondering if it could be cold sore(s)? They can come about due to stress on a compromised immune system (chemo) and they are indeed painful! Have you ever had cold sore(s)? If you carry the herpes simplex virus (different than the sexual herpes virus) it may manifest itself in this manner. If you've never had cold sore(s), it's unlikely that's what it is.0
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No, I've never had a cold sore and I haven't had any mouth sores. My mouth just feels like sandpaper. I have been having bloody noses too but the sores are new and wasn't sure what it was. For now I think I might try vaseline because that's all I have at the moment. I thought about calling my onc but didn't know know if I should bother them with something like this. But maybe I will call anyway. Thanks!!
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Adey The Linedancers goal is 25K! They have at least double the team members. I think they must have some kind of national sponsorship. Notice though none of the individual members are raising the money that we are.
Speaking of creeping up… you'll be taking my #1 spot soon!
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Shannon~ Good to know it's not cold sores. "Bother" your onc. That's what they're here for! They usually take turns being on call (if s/he is in a group practice). I remember what it was like that first time I called "after hours" on a Friday evening and I would encourage you to do it! My hope would be that they can give you something to make you more comfortable.
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HeidiD-no one can/should make this decision for you. I'm going to sound like a broken record, but do get a second or even third opinion. Please check out the Block Center-they have an incredible program. Prayers to you for a decision you're comfortable with.
Going to go sign up for the walk right now-just haven't gotten my rear in gear to do that yet.
Saw my onc and her np yesterday. It was the first time I met the np and I really like her-very personable. She asked if I worried about recurrance and I said no-she said good because there was nothing to worry about. I liked that.
BJ-sorry to hear you've been under so much stress.
Good luck to all the marathoners-run safely and have fun.
I am so looking forward to the Nov. party!
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