Dis Breast Cancer Survivors Part II -GAGWTA!

[Momvic5]

Welcome! Hugs to you and your mom!
My grandmother had Paget's disease, but that was the reason she had her mastectomy. As far as I know it did not recur after her surgery.
My mom just started chemo today for stage III ILC. There are many amazing women on this thread, and a wealth of knowledge. Hopefully someone will be able to answer your questions!

CherylDan - I *think* he was joking. He knows I am on this like white on rice, and if Mom needs me I am on the next plane. I think he prefers to deal with me at a distance, so it is in his best interest to take good care of her so I don't have to book a flight!

Thank you for warm welcome!! This thread is very touching, and I can feel the strength that runs in it.

I am very sorry about your mom. I will remember her in my prayers.

 

[DeeCeeSW]

Maureen, I am sorry this is a tough day! I think it would be very cool to see a medium!

The Neulasta site said something like 31% of patients will experience bone pain, so I wanted Mom to be ready. I have told her to try to head off the problems before they get so severe that she can't function. Hopefully she will listen. Although she prefers NOT to listen, then she likes to come back and tell me I was right. Unfortunately "I told you so!" isn't very satisfying in those situations.

I spoke with one of the other docs in my onco's office (my onco is not in on Weds. so I see another for my shot) about the bone pain issue. I told him I take either Aleve or Tylenol and Claritin for 4 days. He said he wasn't sure if this was the reason why I have not (knock on wood) experienced any bone pain. He says the reason for bone pain IS, in fact caused by the Neulasta shot and not the Taxenes (Taxol or Taxotere). The shot goes to the bone marrow where WBC are being produced. He thinks that bone pain occurs when there is an overabundance of activity there (you will first feel pain in your lower back). He said that some women do not have this happen. I'm sure he explained this differently but you have to forgive me, I am fatigued at the moment.

I told the doc I would continue to take the Claritin as it's done well by me so far. No harm in using it.

Sorry you are having a rough day, Maureen. More hugs and kisses your way!

 

[jackskellingtonsgirl]

Dawn - That makes complete sense. Mom said she was going to pick up some Claritin and keep it on hand. Her plan right now is to just see what happens in the next few days. Hopefully whatever happens won't be too horrible!

 

[lookingforward]

I'm not sure this will work because I am technically challenged. I am trying to post pics of me WITH hair...which one do you like better. The long or short? I have a marine hair do right now...but a girl can dream. Does anyone know if hair ever gets back to pre-cancer normal?

 

[lookingforward]

Oh heck, I can't figure out how to do it!

 

[MerryPoppins]

No time to catch up right now. But I just saw a show on tv where they were talking about Wickers underwear. It's supposed to be great for hot flashes or night sweats as well as sports, etc. And they sell nightshirts, too. Google if you are interested.

GAGWTA! Welcome if you're new and I'm thinking of you if you're not new. Hugs to all that are needing them. I'll come back to catch up soon.

 

[laurabelle]

~~~***GAGWTA sistas***~~~

Momvic5- I'm glad you posted! I do know that after mastectomy the skin is a common site for recurrence. Beyond that I don't know much. I'm glad that she is with a team that is giving her encouragement, that is so important!

jackskellingtonsgirl- Congrats to your mom for getting the first one down! Sorry the port is funky. Hopefully next time will be better. I hope her onc was joking! I bet 98% of his patients don't have a dd like you! You keep him on his toes!

Dawn- I had bone pain during Taxol, but I didn't do Neulasta shots. My sister is a nurse and she told me the pain was most likely coming from the WBCs trying to reproduce in my bone marrow as well. So technically the pain is not from Taxol, but it hurt just the same! I wish I had known about Claritin!!!

Maureen- I'm sorry you're hurting so...
As far as posting pics, I use photobucket. It's pretty easy to use.

Laurie- Good for you! I use very light weights when I lift (which hasn't been happening lately!) and I don't do many reps. At the first sign of my arm feeling weird I stop and elevate it.

 

[snappy]

Hello Ladies~

I do not have Breast Cancer, but I have someone near and dear to me who does ~ my mother. She is 61yrs old, and we have battling it now for 3 years. She had a mastectomy on her right side about 2 years ago, but now the breast cancer has reoccurred on her skin in the site of the mastectomy area and is spreading over to the left breast. It is in the form of a rash on the skin, but it is not inflammatory breast cancer. I have never posted on this thread but have read it several times and have gained encouragement from it. If you do not mind, I would like to ask if any of you have ever experienced reoccurring breast cancer on the skin surface. I would appreciate any of your thoughts. The Dr says it is common, but I can not find any information on it or know of anyone who has experienced it. She has endured months of harsh chemo treatments and as of now, it does not seem to be affecting the rash. She recently was released by her Dr to a research team, and they are very encouragin
g and feel they can help her. My mom is a strong woman as many of you are, and I know she will recover, but we are so overwhelmed by it all. What are your thoughts? Have any of you experienced breast cancer on the skin?

Welcome to our thread!!

I love how you are right in there battling cancer with your mom. You sound like a daughter in the mold of jackskellingtonsgirl.

No recurrence for me at the scar site but I think I have read that this is a likely place. I wonder if breastcancer.org has anything on it?

Maureen check your pm's.

Linda, I keep seeing Pacificas whereever I go. Maybe I just tuned in to them now? Nice car!!

I had my oil changed for the first time yesterday at the Honda dealership. gosh that was painless, great waiting room, etc. Even had a conversation with a grandma type who works in my breast center to pass the time. The dealership is kind of far but I was out towards there at the gym and needed to pickup my Tamoxifen at Sam's nearby as well.

Concerning Tamoxifen. . . for anyone on it, Sam's dropped the price. It must be one of those $4 meds now, I got 189 pills for about $26, it was always over $100. I bet Walmart has dropped their price on it as well.

I was a bit overwhelmed with all the machines. The trainer showed me the ropes on al least 12 machines. I have to admit I feel more comfortable with the cardio machines so I migrated over there afterward.

Not sure if I am going to do the training regularly though, the price she quoted me for the "basic" plan was $1200 for 16 sessions. I thought they were more like $50 per session.

At least I know where to start and can always resort to sticking with the cardio machines exclusively.

It does feel nice to get out of the office and do something for myself. I also feel good afterwards.

Thanks for the encouragement.

 

[lookingforward]

HOPEFULLY...here is my old, beloved, hair that I had right before I got diagnosed. I am worried that my hair won't grow back as straight or as thick (especially with tomoxofin).

This is my daughter and I a month before my diagnosis...at DISNEYWORLD! Happy!

 

[jackskellingtonsgirl]

Maureen - You are beautiful! And so is your DD!
I don't know what post-chemo hair is like, but I hope it comes back the way it was before. I don't think the hair that grows back at first is the way it stays, if that makes sense. I think it looks cute in the shorter cut, but maybe I am biased because that is similar to my cut!

 

[Momvic5]

Thank you for all the warm welcomes!! I know it sounds corny, but I am brought to tears while reading your posts. I guess it is just comforting to know that others do care and can relate to the depths of the battle that we are facing.

Snappy ~ No recurrence for you!! That is wonderful!!
I have searched and searched and can find nothing on it.

Laurabelle ~ The research Dr was wonderful with my mom. He was sensitive and very attentive. His encouragement was so uplifting. I could have kissed him for it.

lookingforward ~ My mom lost her hair twice, and both times her hair came back just as beautiful as it had always been. In fact, she was thrilled to see that she even had less grays. At first it was very soft, but with time, it became its normal texture. Don't worry ~ your hair will come just as beautiful as before too!

 

[Pea-n-Me]

Still on vacation. Here it is after noontime and we just got up a little while ago. Having coffee and making scrambled eggs and homefries. Spent all day yesterday at a glorious beach, one I've been going to since I was little, it hasn't changed and it's so nice to see my kids now loving it too.

Laurie, everyone says the same thing - never noticed them before but seeing them everywhere now, LOL. Congrats on joining the gym. I just started going back to Curves regularly after a two year near hiatus (never dropped my membership, just got out of the habit of going). I'm so glad I've gone back, can feel a difference in even a few weeks.

Welcome, Momvic. I don't know about skin recurrence either. Don't think I've ever seen it discussed here. Hope you can find your answers, and we're here for support however we can help.

CherlyDan You're in my thoughts and prayers. Your doc is right on the ball.

Maureen, I saw Lisa Williams in May. I love her, too! She greets the audience after the show and gives out hugs, signs books (hers is not as good as John's). It was right after BIL passed so I hoped we'd get a reading, but didn't. We had fun anyway, and got a lot out of other people's readings. I've seen John Edward live before also. I've found it to be a little frustrating going in a big group as the odds of getting a reading are low, but you never know. I did once, at another show from a Boston area medium, and it was great. (That was the Hawaii/Poly one that I've posted here about before.) I hope you find some solace in the evening.

We got the autopsy report back on BIL. He died of a heart attack. Only 42. We're also missing him terribly. I also am worried about the implications for my DH as far as family history goes now. Fortunately, our doc is already on the ball with it and agreeable to whatever it takes to keep him healthy and on top of any problems. The hard part is though, that you never know despite all that. What a situation. I feel really badly for my in-laws and his wife and kids, especially.

jsg, I would NOT be happy with that comment. I also don't believe he was kidding, but that's just me. You can bet if it was his own family, he'd do whatever it took as well. Glad the first chemo is behind her. Keep on top of the port situation.

I'm surprised at the statistics on the bone pain. They seem low to me. I myself had horrible pain also, all over my body - to the point I could barely walk for 36 hrs after the first treatment. I suspected it was a combination of the taxol and neulasta. There was nothing I found that helped, really. Claritin was not an option known about at that time. My only concern would be taking anything that might decrease the efficacy of the taxol. I doubt that it would, but would want to know for sure, and not sure that information is yet known. My .02 anyway.

Keeping you all in my thoughts and prayers. GAGWTA

PS Like Laura, if a 2009 meet date comes up, I'll try to make it surely.

 

[jackskellingtonsgirl]

Linda - Your vacation sounds glorious!
Well, even if the onc wasn't kidding, I am not going to stay off the internet. I am also not going to go away. So he better mind his P's & Q's and do his job properly! I can't imagine the Claritin would decrease the efficacy of the Taxol, but I guess stranger things have happened. He did tell Mom she can take the Claritin if she wants to.

I haven't talked to Mom today yet. The kids were in the pool this morning, and DH just picked up DS to take him home. I threw the swim suits in the wash and now I am taking a little break! Princess is napping so I am enjoying the quiet.

 

[snappy]

Maureen, if my hair was as pretty as yours I would missing it too.

You and your DD are simply beautiful!

Momvic5, I know exactly what you mean about posts bringing you to tears, that happens to me often. I feel a deep connection to all my sistas here.
Even if we can't work out this meet thing (but I actually think we will), I feel I know you guys.

I share stuff with y'all that I would never share with our kids. Nothing phases DH, he is a rock, but I prefer to spare him when I go nutso about stuff. He has enough on his plate.

 

[lookingforward]

Maureen, if my hair was as pretty as yours I would missing it too.

You and your DD are simply beautiful!

Momvic5, I know exactly what you mean about posts bringing you to tears, that happens to me often. I feel a deep connection to all my sistas here.
Even if we can't work out this meet thing (but I actually think we will), I feel I know you guys.

I share stuff with y'all that I would never share with our kids. Nothing phases DH, he is a rock, but I prefer to spare him when I go nutso about stuff. He has enough on his plate.

You are so sweet! I agree about feeling close to you all, even if we have not "met". You were all there when I got the cancer card dealt to me. I remember how I did not even want to type the word. Its been a long haul and then, of course, losing my mom...which was even worse.

I hope we can all meet and I can pick up people at the airport, etc. Remember, I only live 2+ hours from WDW!

Welcome to our new posters. Momvic5...I know how important you must be to your mom during her recurrence. My mom was my rock during treatment!

Here is another weird story....my mom and I used to talk about Lisa Williams (the medium) and how good she was. Anyway..I found out she was coming to a city near me (Coral Springs) so I went on line the day tixs went on sale and got row K in the Orchestra. Later, for no apparent reason, I was at work and decided to go online AGAIN and see what tickets were available. Now I did not need any more tickets (I had two). So I plug in the info expecting to get rear orchestra or mezzanine since it was day three of the tickets being on sale. Low and behold two seats, in the center, row ONE came up. I bought them figuring I would sell the other two. Is it me or is it weird that I got the urge to "see" what tickets were available and found two in the front row? Now...my Dad says he wants to go and is postponing his trip to see my mom's family in Germany by a few days to attend. I NEVER would have guessed he would want to go...but he is. And so is my sister. So I needed the four tickets anyway. Weird. I feel like something is leading me there.

 

[lookingforward]

Maureen - You are beautiful! And so is your DD!
I don't know what post-chemo hair is like, but I hope it comes back the way it was before. I don't think the hair that grows back at first is the way it stays, if that makes sense. I think it looks cute in the shorter cut, but maybe I am biased because that is similar to my cut!

I am definately going to keep my hair short when, AND IF, it grows back like before. Its so thin and gray right now. I look like a middle aged marine. HA! (and I am married to one )

I have a huge decision to make. I need to decide whether I want to get a preventative mastectomy when I have my plastic surgery.
Pros: no mamograms and MRI's forever
A better matched "set" with the implants
A 2% chance of local recurrence vs. a 10-15%
The surgeon can save much of the skin and areola (sp?)

Cons:
Loss of feeling
more surgery
pain

I am on the fence. My mom was very much pro having the other side "done" to be safe. I am so confused.

 

[Iluvthemouse]

Beautiful picture Maureen.

 

[snappy]

I am definately going to keep my hair short when, AND IF, it grows back like before. Its so thin and gray right now. I look like a middle aged marine. HA! (and I am married to one )

I have a huge decision to make. I need to decide whether I want to get a preventative mastectomy when I have my plastic surgery.
Pros: no mamograms and MRI's forever
A better matched "set" with the implants
A 2% chance of local recurrence vs. a 10-15%
The surgeon can save much of the skin and areola (sp?)

Cons:
Loss of feeling
more surgery
pain

I am on the fence. My mom was very much pro having the other side "done" to be safe. I am so confused.

This a a tough decision, Maureen. I am the last one to give any advice. You were not on our thread then, but I agonized just about the reconstruction for a good 9 mos.

I really did not want more surgery so I fully understand your dilemna. I did not have enough skin to cover so implants were not an option. The free tram is a lot of surgery.

Both the breast surgeon and my GYN doc really encouraged me to go forward. Ultimately, after seeing 3 plastic surgeons, talking to a friend who is a doc and has had a reduction (no cancer), and obsessing about it on this thread, I was suddenly ready. I really felt at ease about it finally, which surprised me after all the angst.

My case was different, instead of another mastectomy I had a drastic reduction along with the tram flap. It was really a cosmetic decision, not a medical one, although it vastly improved my quality of life. The decision you are facing calls I think for looking carefully at the projected reduction of risk for having the second mastectomy.

I was told by at least one of the surgeons that an implant on one side and a natural breast on the other, even after reduction and/or lift end up sooner or later mismatched again due to the aging process. If you are not large, I would not think it would be as important. I had significant sagging after lengthy breast feeding of 3 kids. All of my great aunts had the same level of sagging, although not my mom or sister as they are much smaller than me.

There is no simple way to address this as it really depends on your feelings about the situation coupled with your particular case and your body type as well.

So many factors.

My breast surgeon did advise me to wait 18 mos-2 years to have the reconstruction. I was never sure if this was to make sure no reoccurence would happen in the short term or if living with my body post mastectomy would help me make up my mind. The plastic surgeon told me patients in my situation were his best patients as they were motivated.

Uh yea, being drastically opsided, living with a mega silicone blob in this hot climate. But honestly, I don't think I would have gone forward with it without the right doc. I actually scheduled the surgery on the day I met him, I was that sure that he could help me.

On a different note, you are very generous to offer to pick up from the airport. I am so happy at the prospect of doing the get together.

 

[jackskellingtonsgirl]

GAGWTA!!

Maureen - No clue what to tell you about the elective mastectomy. Whatever decision you make, just be at peace with it and I am sure everything will be fine!

Laurie - Good for you for getting to the gym! I use my schedule as an excuse for not exercising, but the fact is I am lazy.

I am excited about the prospect of meeting next year, too! DH seems fine with it. He hasn't said he is opposed, so we'll take that as a yes! He likes to go to WDW in cooler weather.

I told him this morning that I want to plan a trip with my mom in 2010. That one I expected him to oppose, but he really didn't. He wasn't jumping up and down with glee, but he was OK. So we'll see how her treatment goes and maybe try to bring it up over the next few months. 2 years is a long time off, but it might give her something to look forward to. She has never been on a nice vacation.

 

[laurabelle]

~~~***GAGWTA sistas***~~~

Linda- Your beach trip sounds relaxing. We have one planned for next month. Hubby's band is playing in a resort town about a 3 hr drive from here so we decided to make a little vacation out of it. Going to visit our friend at his lake house for my birthday weekend too. Oh yeah, and both areas have outlets too...shop til you drop then relax...

Maureen- I loved your pics! Your daughter is precious! As far as your decision goes I would never try to persuade you one way or another but after you gather your info and your dr.'s recommendations, follow your heart sista...

jackskellingtonsgirl- I don't believe Claritin would affect chemo. I had an awful runny nose during A/C and my onc put me on Claritin then. I didn't stay on it because I couldn't stand to take one more med...now I wish I had!