I would love some advice.....on a scary topic. Breast cancer.

[movie zombie]

FG, i applaud you for doing the research BEFORE making the appointment and going in with your mother. too many people just sit back and say, ''oh, s/he''s the doctor and they must know what they''re doing''. in reality, it is our bodies and our health. the more informed we are the better we can talk with our healthcare providers.

if you get the chance, checkout: kpfa.org online, specifically the program titled :Your Own Health and Fitness with Layna Berman. many of her shows are archived. i know that at some point she did a show on cancer and the endocrine system. it might be worth listening to if you can find it. i can''t but my computer geek husband found a way to access the old archives.

also, checkout her website: http://www.yourownhealthandfitness.org/Topics/topicsCancer.html because she certainly gives the links to the guests she has had on her programs.

movie zombie

 

[monarch64]

FG, just wanted to check in and tell you I hope your mom''s doing well.

I know this is a trying time for you as well as your mom and whole family and I want you to know that I, as well as many other PS''rs (obviously) are here for you and want to support you and your mom and family.

I "practice" walked another 17.5 miles on Saturday this weekend and again, thought about you and your mom...next weekend is the actual event and I so look forward to it. I will be thinking of you FG, and you mom, who I will nickname Mama FG for the walk. Hope you don''t mind... just my way of sending positive vibes your ways. I really wish you all the best and look forward to crossing the finish line with you and your mom in mind, as well as the rest of my friends who need those positive vibes. Take care of yourselves!

Heather

 

[FireGoddess]

Date: 5/30/2006 12:55:39 AM
Author: monarch64
FG, just wanted to check in and tell you I hope your mom''s doing well.

I know this is a trying time for you as well as your mom and whole family and I want you to know that I, as well as many other PS''rs (obviously) are here for you and want to support you and your mom and family.

I ''practice'' walked another 17.5 miles on Saturday this weekend and again, thought about you and your mom...next weekend is the actual event and I so look forward to it. I will be thinking of you FG, and you mom, who I will nickname Mama FG for the walk. Hope you don''t mind... just my way of sending positive vibes your ways. I really wish you all the best and look forward to crossing the finish line with you and your mom in mind, as well as the rest of my friends who need those positive vibes. Take care of yourselves!

Heather

Thanks for checking in Heather. It''s been a week and a half since mom had her first round of chemo and so far so good. We''ve been holding our breath at this point to see how her body reacts to it. She seems in good spirits so far but we know she''s due to lose her hair soon so we''re bracing to keep her uplifted at that point.

Great job on your practice walk - I have been keeping track that the big event is this weekend!! How has your fundraising gone? Not only would we not mind, we would be honored about the Mama FG on your walk!! Truly.

 

[Dee*Jay]

Firegoddess, great to hear that your mom is holding up well after the first round! Since she did OK the first time I''m hopeful she''ll be like my friend and do OK for all of them.

 

[Sundial]

FG I hope your Mother continues to do well with her treatments. She is blessed to have your support through this ordeal.

 

[ljmorgan]

Depending on how her chemo goes, I would recommend having her file sent to the MD Anderson Cancer Center in Houston, TX. They can evalulate her treatment or offer different treatment recommendations. They are the number one cancer center in the US, and they saved my life. I was diagnosed with cancer in Virginia at age 20 (I''m 22 now) and the cancer specialists here told me they would have to remove my leg (pelvic cancer, stage 3.) Someone recommended that I contact MD Anderson, they performed my surgery and I didn''t lose my leg at all, they have very advanced surgical treatments and chemotherapy. Their survival rates also beat every other cancer center in the US.

I would say the best thing you can do for your mother is just act normal. A big problem with cancer is that you feel alienated because the people around you can start acting differently, which feels strange and isolating, even though friends and family are just trying to be nicer and to help. I wish your mother so much strength and luck!

 

[FireGoddess]

Thanks so much DeeJay and Sundial - I hope I'm just doing whatever it is she needs or wants to make her feel better! I hope she keeps on kickin' butt and takin' names.

Lindsey - it's ironic that I was literally across the street from MD Anderson at BCM for SIX YEARS and now that I've moved away this comes up. I will look into it depending on how her chemo goes. Thank you for your personal insight about acting normal - this is stuff I seriously want to know because I don't want to make her feel worse!

Round 2 of chemo starts a week from today.

 

[Kaleigh]

I hope round 2 goes well for your mom. I have been praying for her from day one. Of course you and your family are in my prayers as well.

 

[hlmr]

Just checking in and wondering how your mom''s spirits are lately? Thinking of you both.

 

[KristyDarling]

FG -- just thinking of you, your mom, and the rest of your family. How is she doing? How are you holding up?

 

[ammayernyc]

Date: 5/30/2006 5:20:07 PM
Author: FireGoddess

Date: 5/30/2006 12:55:39 AM
Author: monarch64
FG, just wanted to check in and tell you I hope your mom''s doing well.

I know this is a trying time for you as well as your mom and whole family and I want you to know that I, as well as many other PS''rs (obviously) are here for you and want to support you and your mom and family.

I ''practice'' walked another 17.5 miles on Saturday this weekend and again, thought about you and your mom...next weekend is the actual event and I so look forward to it. I will be thinking of you FG, and you mom, who I will nickname Mama FG for the walk. Hope you don''t mind... just my way of sending positive vibes your ways. I really wish you all the best and look forward to crossing the finish line with you and your mom in mind, as well as the rest of my friends who need those positive vibes. Take care of yourselves!

Heather

Thanks for checking in Heather. It''s been a week and a half since mom had her first round of chemo and so far so good. We''ve been holding our breath at this point to see how her body reacts to it. She seems in good spirits so far but we know she''s due to lose her hair soon so we''re bracing to keep her uplifted at that point.

Great job on your practice walk - I have been keeping track that the big event is this weekend!! How has your fundraising gone? Not only would we not mind, we would be honored about the Mama FG on your walk!! Truly.

My mother lost her hair with the chemo when she had breast cancer. However, about 10 years later she was diagnosed with a different form of cancer and had to go through a much more agressive form of chemo... however, she did acupuncture while going through it and barely lost any hair! I really suggest that you look into it. She was never in pain and the hair thing was amazing.

I hope you and your mother are coping well.

 

[FireGoddess]

Thank you for your prayers Lisa, we are grateful for every one we get. I know they are doing some good for her spiritual as well as physical well being because she takes great comfort in it. Thanks for asking Heather and Kristy, mom seems to be in decent spirits although she told me yesterday that some of her hair is beginning to fall out. I suggested she might want to cut it short to lessen the shock. Since her next treatment is in less than a week I'm sure it's going to be coming out even more, so I hope she does cut it. I am pleased that she is really interested in the endobiogenie/alternative medicines thing and is going to talk about it with her doctor, so thanks for the tip Amanda. She is doing pretty okay so far, she's just nervous that the chemo is going to be a cumulative thing and she will feel worse with each treatment instead of just the same after each one. Having no experience with this I didn't know what to tell her. Hopefully it just stays the same, not worse.

So far I think we're holding up okay. Good days and bad. More good than bad right now, which is great.

 

[movie zombie]

an out of state friend''s wife was diagnosed with breast cancer about two years ago. friends and family threw a party for them and it was a HAT party. eric said they were both so very very touched....and he was unable to control his tears at the event. the love and support they felt endures and helps them through the rough spots. and the hats are not only useful given her hair loss but a reminder of how very lucky they are to have their friends and family.......

some interesting hats can be found here: http://www.villagehatshop.com/hats_categories.html

movie zombie

 

[FireGoddess]

MZ that is AWESOME. I''m going to surf that website for awhile. Mom did buy a wig but is afraid with the summer heat and humidity she''s going to BOIL under it. I am definitely going to look into some hats for her, and scarves. We don''t know yet what she''s going to feel most comfortable wearing, but options are always a good thing. THANKS!

 

[Dee*Jay]

Firegoddess, my friend who recently went through chemo bought a wig and wore it exactly ONE TIME. She hated it; said it was VERY uncomfortable. So, I wouldn''t be surprised if you mom doesn''t wear hers much. There are tons of options out there. My friend even found a really cute basebal cap with hair attached underneath that looked very real.

 

[tawn]

FG

Just wanted to let you know that I''ve been thinking of your mom...and you! Sending positive thoughts, and hope that you''re both holding up well!

PS My friend with breast cancer wore a variety of pink baseball hats, scares, etc...the wig made her crazy too!

 

[FireGoddess]

Thanks for thinking of us Tawn. Mom''s hair all came out in one foul swoop yesterday.

That was kinda traumatizing. I would never have even thought of this but her scalp is extremely sensitive right now and it''s hard to sleep on it. I hope that goes away soon and maybe her doctors will have some insight at chemo tomorrow. I can''t imagine wearing a wig would be comfortable in that situation! She said she''s wearing a scarf right now but saw a hat she liked. She may get that.

 

[blueroses]

Just checking in w/ your mommy, FG! I''m sorry she has a tender head

My aunt did too. I found a very fuzzy hat that she liked, and she also liked scarves ok.

THinking of you!!

 

[FireGoddess]

Thanks for checking in, Blueroses. She is SO hating the wig - only wears it to work. At home she wears a scarf. I keep wanting to buy a hat for her but have no clue what she wants or likes. She did like one she saw while out, so I''m trying to convince her to get that.

She''s still a fighting champ, though the doctor says that with the next chemo her white blood cell count will likely dip below ''okay'' and she''ll have to come back for a neulasta injection (white blood cell stimulator). Hope it doesn''t come to that but if it does, I hope that works!

I will be thinking of you and your reunion with your BF tomorrow (cuz tomorrow is my birthday, too). I hope it goes well and the outcome is what''s best for you, whatever it is.

 

[Sundial]

Just stopped by this thread to see how your Mom was doing FG. I am so sorry that she is having to deal with all of this! I will say a prayer for her continued strength throughout this ordeal.

With everything that is going on I hope you still have a wonderful birthday tomorrow!!!

 

[allycat0303]

Hi Firegoddess,

I''m terribly sorry to hear about your mother. I don''t usually venture into this forum, so I didn''t know your family was having health issues. I really want to send you my thoughts and prayers through this difficult time. I did some research on the endobiogenie (seeing as how I''m french and a med student, I searched through the ressources that I was aware were impartial). I don''t know if you are still considring this option, but since you mentioned it once, I thought I would look.

What might help you is the english name is endobiogenics, here''s a definition of the term:

"Endobiogenics:
Endobiogenics is the application of both laboratory and physical exam findings to determine the combined function of the autonomic nervous and endocrine systems (neuro-endocrine). The results are then utilized to select precise phytotherapy protocols that will restore healthy organ function"

From what I gathered, the approach combines a) phytotherapy
b) lifestyle changes to decrease stress, anxiety, etc.,
c) dietary changes.

Unfortunately, I wasn''t able to find out exactly what plants/herbs that this approach perscribes. I looked phytotherapy up in a site recommended to all 1 st year med students in Quebec (because it is impartial and based on compilation of all lots of research and made by medical professionals). So generally, for phytotherapy associated with breast cancer, commonly perscribed supplements include Beljanski, la formule de Hoxsey, la formule Essiac et le 714-X. (Sorry if it''s in french...but most names are similar in english). There is currently no proof that these work, and not enough clinical trials have been done to be able to say if they are safe or effective.....but they speak of this in terms of inducing remission ie, sayin there is no proof that these treatements will induce remission. They are aware that beta carotene supplements (yet not when in food) may have a slight effect on increasing the risk of lung cancer, so this is not recommended.

However, for the other component of the 3 part treatement diet, and lifestyle changes are usually endorsed by doctors. Things that have shown to work (they rate it on 3 stars. 3= certain of effect 2= probable effect 1=possible effect (so this is with existing reserach/clinical trials)

Acupuncture (to reduce nausea during chemo)(3 stars)
Visualization, Massages (to decrease stress and anxiety) (3 stars)
Dietary changes: There''s many books that exist in cancer preventing foods...I know your mother is already been diagnosed with cancer, but these are positive changes that can''t HURT. This one is unrated, because of lack of clinical trials (because people eat so many foods it''s nearly impossible to do a control trail) but is listed as approches to be considered.

I know you didn''t mention what type of cancer it is, or the grade so I''m making assumptions. Sometimes tumors are big (so they have high staging) but they have a low grade (i.e well differentiated and look like normal cells, which means they are less aggressive). Usually for stage 3 though, they will recommend participation in clinical trials, which I know you mentioned back in another post, so I wish you all the best with that.

And, I''m sure you already aware, but because some types of breast cancer have a genetic component (and I don''t know how old you or your mother are) that you should mention it to your doctor as well. We need you to be taking care of youself too sweetie.

I don''t know where you or your mother are situated but I worked as a volunteer at Gilda''s Club for many years.

http://www.gildasclub.org/wheretofindus/

They are a non-profit (free) cancer outreach program. And the support these men and woman give is phenomenal. The one in Montreal was laid back, warm, understanding. And they have support groups when cancer patients, and sometimes it could help to talk to someone who''s going through or been through it. So if you''re near one of the clubhouses, it might be something your mom would be intrested in.

In any case, the first thing Gilda''s club taught me was to say "People living with cancer" Instead of "cancer victims"

Lots of love to you and your family, if I overstepped any boundaries, I apologize....oh yeah...sorry about the monstrous post too

 

[FireGoddess]

Thanks for checking in Sundial, and thanks Allycat for your post. We are still considering supplementing the regular therapy with Endobiogenie possibly. We are going to see how it goes. I appreciate all of the info you went through the trouble to find!! The type of cancer is invasive lobular carcinoma, stage 3. Grade 2, so not completely undifferentiated but a mix I believe. Mom immediately asked her doctors about the genetic component but they told her this one is not particularly hereditary so we shouldn''t worry. However, I am 32, so no mammograms yet but I plan to talk to my gyn at my yearly exam this winter and discuss what has happened, when I should get the baselines done, and that I want a baseline ultrasound as well if I can make them do it. This particular type of cancer is not the most prevalent but is difficult to diagnose because instead of the cancer cells growing like a ''ball'' where you can feel a lump, they grow in a line like a ladder and become a cancerous ''band'' of tissue which can''t be felt, and is difficult to image. Her tumor was 7 cm by 2 cm (hello, HUGE!) and undetected. But the doctor did grade the cells at a 2.

It''s unfortunate but I believe that we really need the info to fight for our own lives! Mom was on HRT (which could have helped cause the tumor, if not at the very least been feeding it all this time since the tumor is estrogen receptor positive). Additionally, she was trying to be healthy and eat lots of soy for her heart and cholesterol and all that...but soy is full of estrogen as well, which was likely hurting more than the soy was helping! I did buy them a book on what to eat after a cancer diagnosis which dad is helping her with, so that''s good.

The endobiogenie book I got her was about a woman with stage 4 breast cancer and metastases, and she thinks the endobiogenie helped control the metastases and stopped them from growing. Who knows if that''s true but she''s lived now for years longer than her diagnosis predicted. So it''s something to consider for us if we can incorporate things that can only help, but at the very least not hurt! Thanks for the info Allycat...if you find any more, please shoot it my way!!

 

[monarch64]

Hi FG...I wanted to offer a suggestion on the wig issue. My mother''s best friend has had cancer (not breast cancer) 4 times now and she went through the same thing with her hair falling out from the chemo and has 5 wigs, all of which she hated because they were so hot. Finally someone told her to take them to a salon and have them thinned out. It worked, and she says they are much more comfortable now that there isn''t SO much hair in them. I don''t know anything about wigs, but I thought maybe your mom could take hers in and have it thinned out to alleviate a bit of the "hot" issue. HTH.

 

[tawn]

FG...I hope you''re remembering to take good care of yourself because you to, for you and for her!

My mom was in a very bad accident years ago, and spend 2.5 months in the hospital...and then had a long recovery at home where I was her primary caregiver. I lost 20lbs that I couldn''t afford to lose and everyone thought I was anorexic or on drugs! I was a complete nervous wreck, didn''t sleep, and poured all my energy into caring for her...but didn''t take care of myself. My mom finally sent me off with my Uncle for 2 weeks, and it took me a good long while to pull myself back together again!

I hope you''re both doing well!

 

[justjulia]

FG, I just saw this thread. I just wanted to say that it''s been in my family and I know it''s rough going through it as an observer. It''s true what they say about "living with" because my father, his wife, and my mother are all living well and have been for years and years after treatment. Take care of yourself. jj

 

[FireGoddess]

Thanks for the well wishes Tawn and JustJulia! I was a little down and freaked out this weekend because mom is starting to get more side effects...mouth sores, and her white blood cell count and GMCSF were down to the point she has had to go in to the hospital every day for the last 4 days to get neupogen shots. When I talked to her she sounded okay emotionally so that made me feel a little better. It just sucks seeing these things happen to your MOM, one of the people in your life along with your dad who is just supposed to be invincible! I know bad days are to be expected...I just hope they pass quickly.

I will recommend what you suggested, Monarch. She hates the wig and only wears it to work but maybe if she gets it thinned at least it won't bother her so much while she's wearing it at work. I will be sure to tell her!

 

[hlmr]

Oh FG, I felt so sad for you after reading your post. It''s awful you have to see your mom suffer like this. I''m glad to hear she is sounding strong emotionally but as you say, it is still so very hard and my heart goes out to you.

Strength and warm wishes to you and your mother.

Heather

 

[monarch64]

Hi, FG! I wanted to bump this thread and ask how your mother is doing. I apologize for not keeping up with you more...BC''s been on my mind again lately--I received an email forward this morning regarding Inflammatory Breast Cancer. I will post it tomorrow at work where I can retrieve it from my email. I went for a walk tonight and pulled out my Avon Walk t-shirt, and that also made me think of your mom. I hope she is doing ok through the treatments and that you are, too. Thinking positive thoughts for you, your mom, and your family!

 

[FireGoddess]

Date: 8/15/2006 10:49:08 PM
Author: monarch64
Hi, FG! I wanted to bump this thread and ask how your mother is doing. I apologize for not keeping up with you more...BC's been on my mind again lately--I received an email forward this morning regarding Inflammatory Breast Cancer. I will post it tomorrow at work where I can retrieve it from my email. I went for a walk tonight and pulled out my Avon Walk t-shirt, and that also made me think of your mom. I hope she is doing ok through the treatments and that you are, too. Thinking positive thoughts for you, your mom, and your family!

Hey Monarch! Sorry I didn't see this sooner. Thanks so much for asking. Inflammatory breast cancer is particularly bad, as far as I can recall. It is uncommon but grows very quickly. It was unfortunate that my mom, shortly before being diagnosed (but after initiating having the ultrasound and mri done), read an obituary in the newspaper of a young woman who died of inflammatory breast cancer. It scared her because the symptoms were similar to what she felt. Thankfully that is not what she has, but the inflammatory is a very scary thing.

She is hanging in there as best she can. Good days and bad. She is just over the hump as far as chemo is concerned - that is, she has just completed her 5th round of chemo in a total regimen of 8. This 5th treatment was the first with a new drug (taxotere). While the taxotere isn't supposed to have as severe side effects on her, she is strugging with the Neulasta that they give in order to stimulate the white blood cells to grow (as chemo destroys them). Apparently it feels like every bone in your body is breaking, so she has been in extreme pain. Thankfully my dad stepped up and even though she told the doctor she was 'fine' he was like, "She is totally lying to you." GO DAD!!!! That must be where I get it from.

LOL. So now she's got some pain meds to get through that.

If all proceeds in the timetable according to plan, the mastectomy will be sometime in November. The good news is that the tumor is shrinking (they were going to do an MRI but could tell just from palpating it that it is smaller, so they just continued on with the chemo). My main concern at this point is killing everything and anything that had gotten to the lymph nodes or anyplace else.

On a random note, I wanted to tell everyone something that I told my mom, because I think it's important. I am not a medical doctor, but I have a doctorate. It happens to be in infectious diseases (viruses, etc). Maybe because of my training and all I have no problem talking to doctors about any questions I have, anything I want explained, and I don't feel like I'm bothering them to ask questions and have them demonstrate to me that they know what the latest research is. For this reason, I told my mom to please NOT feel intimidated when talking to the doctors, not to think any question is stupid, and NOT to think you are wasting their time. They work for YOU. I think it's really important people understand this. She told me that it's easy for me to say because I am on equal footing with them, intellectually. I told her that this was exactly why I was telling her not to feel intimidated. It is their job, they work for you. Make them explain things to you if you don't understand, and don't be afraid to ask questions! It's your health and your life. Some doctors are great and will do this anyway - her oncologist is one of them. He will explain things to her in broad terms so that she understands, and then I'll call him up and he'll tell me specifically about granulocyte colony stimulating factor or whatever it is. But you don't need a scientist in the family to get the information you need, want, and deserve. Okay, off the soapbox.

Thanks for asking, Monarch!!! Sorry about the soliloquy!

I broke it up into colors to make it less daunting to look at.

 

[curlygirl]

FG, I''ve been following your mother''s story but I just feel like I''m not good with words so I haven''t posted to this thread. Your mother sounds like a real trouper. My heart breaks to think of what she''s going through but she''s very lucky to have you and your father for support. You are a wonderful daughter and I''m sure you provide a great deal of strength for her. Please keep us updated and know that you, your mother and your whole family are in my thoughts and prayers.