Calling all TNs

Lovelyface

Oh Annie, dear, I will most definitely visit you when I visit my mother in Auckland, maybe next year.  I would love to meet you and give you a huge big hug, for all the laughs you have given me with your wonderful, cheerful personality which shines through your words.  

Regarding eyes, wow, I am so amazed to see how many of us have suffered with our eyes with this treatment.  Some of you might find this interesting ....... In 2009, when I was having weird symptoms in my body (which I now know was because I had breast cancer) and doctors did not know, one neurologist had done so many tests on me, I mean she covered everything, including things like checking Vitamins, heavy metals, arsenick, prior viruses.  I mean nothing was left out.  I treasure that blood test of 2009.  Then 6 months later I was diagnosed.  After all those tests had been done, they had found nothing, except that I had sleep apnea and that I should use the CPAP machine, which I have done off and on since.  However, one other interesting piece of information I have is that I was for once in my life "smart" enough to write down in my journal, that my eyesight was not good, before the chemo started.  So I had the perfect baseline noted for my health status, before I started chemo.  So for me, I don't blame the chemo for my eyesight problems, not entirely.  I did have those weird tears, and dead looking eyes during chemo, but those symptoms were temporary and they went away after the treatment finished.

I believe that my eyes do not sleep at night, or that it does not get oxygen.  It is so strange, but they say people who have sleep apnea wake up all night long unaware that they are waking up.  I am not tired like other sufferers, but it has definitely damaged my eyes.  I have experienced that eye doctors are good for NOTHING.  It is a waste to go to them.  Did you know that they were divided between, the "the front eye doctor" and the "back eye doctor".  The back eye doctor (Retina Specialist) can give you no answers as to the causes of the decline in your vision.  According to him, it has no connection with your eating, sleeping or anything else.  In my opinion, that is ridiculous, because, I believe every body part is connected.  The front eye doctor knows nothing either, I mean nothing.  I have gone to them, they shine their lights and make things even worse, in fact I started having terrible headaches from those lights.  I tell them to stop shining those lights in my eye.  I have no idea what they can do anyway.  I have macular pucker which is a sort of swelling of the epiretinal membrane.  One eye doctor told me he has seen that in patients who have sleep apnea.  I use the CPAP machine sometimes, but it is very uncomfortable.  I also developed very large circles around my eyes which are notable first thing in the morning when I wake up, so I feel my problems are related to lack of proper sleep.

When there is any danger to your retina (vision), the natural instinct of the retina is to form a very thin layer in front of the retina, so as to protect the vision.  In addition to sleep apnea, I feel that maybe during dose dense chemo (which is what I had), maybe due to the danger to my retina, the epiretinal membrane formed.  It was a one time event.  In order to take that membrane out, they can do surgery, but it can fall off naturally by itself as well.  I will never have surgery in my eyes, never.  I feel that there must be a natural way to get this thing healed by itself.  When I was in my 40's I could not see distance.  Now in my 50's I can see distance, but cannot see up close.  I thing this is all a natural rythm of getting old in additional to the sleep apnea problem I have.  Doctors told me that even children are having sleep apnea problems these days, so that is another newer disease in the market today and I have it.  What else is new, right?

Titan

So excited to hear Lovelyface, BanR and Kathy!    missed you all.....really happy that we still keep in touch....waving back to all of you..

Kathy..been to a casino lately?  We may have to stop cause my hubby can't win a dime...I have been doing pretty well..but tired of giving him $$$....

lilyrose53

Hi all,

Regarding bird watching - I used to enjoy it so much as a kid.  My elementary school principal took a small group of us to a bird sanctuary.  First time I got to use binoculars...it was fun! My dad was a big bird watcher.  We always had feeders and such around our house.  I really miss seeing and hearing so many of the eastern birds since moving to AZ.  But I have come to love watching the quail here.  They are so comical!  I am still trying to identify a lot of the others.

Wishing all of you well,  hugs,  lilyrose

Cocker_Spaniel

Lovelyface I will look forward to that great big hug, hopefully next year.   Would be out of this world wonderful to see you.

AND

Well, well, well, look what the winds blown in after all this time of being AWOL.  Shame on you,  plus I didn't even know how my Mom was so you give her a big hug and a kiss from me.   I suppose you have been at that darn casino all this time, chatting up all those men!!. (You lucky girl).  Seriously I am so pleased to see you are still alive and kicking.  I have missed you so much.  Your post said sweet sod all, we want to know exactly what you have been up too (exactly) lol.  As Bert said to Mary, "don't leave it so long next time Mary Poppins". 

I've had two days off with a rotten cold.  I thought about taking another day off but I even sounded better to my own ears.  I got to work and two Doc's said you shouldn't have come in Annie but we are glad to see you (typing building up that's all, not through any love lol).  I thought bugger I could have had that extra day off after all.    

In our garden we have lots of little Tui's (Not sure if you have them where you ladies are).  I have to feed them on the garage roof because the cat sits underneath.  The Tui's are blue and grey and have little white (what looks like) pompoms on their chests.  They sing beautifully too.  I sit on the porch and watch them all and also the other little birds that come every time to eat all the bread. So many come that I end up using up a whole loaf of bread on them but they are so worth it.    Like you Lilyrose I am trying to learn the names of them all.     

Titan you should know by now it's the other way around.  If the old feller wins I take some of  his winnings and if I win I say it's time to go home now. Mind you our casino wins would  probably would be chicken feed to yours. Hamiltons biggest win  is about $30,000 and Aucklands is about $500,000.  Though there is always a lovely car to win valued at about $50,000 at each.  I'm sure you have bigger wins than ours in your country.   

Don't go way Kath...................

LPBoston

sarajaneenvans - I am so sorry to hear of your friend - it is devastating.

Thank you everyone for confirming the whole nail issue.  I have to say I am not much of a girly girl and hardly ever painted my toenails or fingernails (I bite my fingernails out of nervous habit since I was very young) but after my husband commented on them they are now painted and I can wear open toe shoes.  It's funny because after our hair grows back and we don't look like a cancer patient anymore people don't realize all the little side effects we have to deal with after the fact. 

We just have to keep plugging on and being strong and have a positive attitude to get through it all.

Cheers to you all for everything you have to go through!

Luah

Alicia: Just wanted to chime in and say there have been many women on these boards who had to postpone a chemo due to low blood counts. Try not to worry; in your overall treatment it won't make a difference. Think of it as knocking such a huge punch to your system (and to any possible cancer cells) that you need an extra week to recover. You're doing the right thing by getting neupogen (or neulasta) to keep your counts up. Some women experience bone pain from this, I didn't. And although I didn't have to postpone for low blood counts, I did have to take a little break between AC and taxol to have an infected tooth pulled. I worried about it then, but in hindsight, needlessly!)

sarajaneevans

LPBoston, thanks for the kind words...I agree with your post re: toenails. my toe nails reminded me of my Aunt Ida's 85 year old toes....i tried to keep them covered up to keep from throwing up my self whenthey came  into view, but covering them only made them hurt more...they have all pretty much healed up, except for the big one left foot..it was the worst of the lot and is still so painful..I just keep dousing it with vicks vapo rub hoping eventually it gets the message..

natl12...I get my new glasses tomorrow and I am very excited to be out of this soft focus world I have been living in..I have nerve damage to one eye, which causes double vision and requires me to wear prisim glasses....I had to wait till everything had healed before getting my eyes examined for new prisim glasses..and boy let me tell you I cannot wait for tomorrow to come...

Thanks for the kind words re:my friend. I am beginning to wonder if in the end she made a choice to have no further treatment b/c her brain had been affected...she always said her brain was her most prized possession...not a question I feel comfortable asking the family ....she had been such a fighter up to that point..very positive, and determined..the news about her brain seemed to,have taken all she had..I never spoke to her after she got that news..she was gone in just a few days time.

Lovelyface....I found your post re: sleep apnea very interesting....when I had my first cataract surgery in March..the anestheologist asked if I had lung disease... I told him no! He said my oxygen level was low and needed to be addressed..no low enough to cancel my surgery, but low enough to be alarming and that I need to get with m y primary to get it checked out....long story short she suspected sleep apnea and sent me for a study, which has resulted in my having to go back next week for the crap test...I asked my radiology oncologist what he thought. He advised me to rent the machine and just see if I notice a difference in how I feel...it just seems that since I got the cancer diagnosis everything else is going to hell too..sje

Lovelyface

Sarajanevans, I find your story interesting that the doctor told you about low oxygen. Would that be oxygen in your blood or oxygen in your eyes?  I have never been told that, but would like to know.  Wonder what blood test relates to oxygen levels. I swear I want to learn so much about eyes, but find nothing, I mean nothing from doctors and nothing anywhere from which I can learn and try to heal myself.  As soon as I start using the CPAP machine, I get so many setbacks, that I have to stop for several days or even weeks, then start all over.  I honestly am not able to tell the difference between using or not using the machine, as I am not sleepy during the day like other sufferers.  If that is what is affecting my eyes, then I would like to use it every day.  I used it the night before last, so today I have an eye infection.  It is never ending.  If you find that your oxygen has improved from the machine use, please do let me know.  That would surely be very interesting.  Sometimes, I want to believe that my sleep apnea, the lack of oxygen in my cells, may have caused the breast cancer.  But then I have a million other theories.  I will never really know why this has happened to us, and what the heck causes BC.

sarajaneevans

Lovely..it was oxygen in my blood...they were giving me oxygen almost from the get-go while in pre-op...

When I was going through chemo my oxygen levels were low..my onc., ordered some kind of scan.. I don't recall what it was but it was negative for whatever he was looking for....so he determined the low levels were due to the chemo..which I pretty much suspected...

I was surprised when the anesthesiologist brought it up to me in pre-op.

Have you heard about the new treatment the FDA has approved for this condition??  Its some kind of device that is implanted in your chest( made me think of the port) anyway you click it on at night before hs, and off when you awaken in the morning..it does require a two hour surgery though. And then I expect it will have its on set of problems..

I will definitely let you know what I think...my radiology oncologist said I should notice a difference right away..so I hope he is right..

Google FDA approved new treatment for sleep apnea....

LPBoston

I finally made an appointment to get my eyes checked with a new eye doctor - will let you all know the outcome next week.  I am hoping it is just old age that is just making my eyes worse.  I really don't want any other issues right now.

As for those toes nails - they are looking so much better after I polished them (as long as no one looks at them closely)

sarajaneevans

I hope so too LP!! I' ll be anxious to hear....i was supposed to get my new glasses today, but they couldn't pass inspection or some darn thing, so,it will be another week of lblurry living.... 

Stupidboob

just wanted to post this in hopes it might help someone, some where.

http://www.foxnews.com/health/2014/05/15/woman-cancer-wiped-out-by-measles-virus/

Allydp

Ban and Luah, thanks so much for the feeback. I'm glad to know taking a week off isn't a big deal.  

Stupidboob

This is beautiful.............please watch the video.  It is about all woman and their body image

http://www.redbookmag.com/kids-family/blogs/mom-blog/taryn-brumfitt-before-after-cosmo?src=spr_FBPAGE&spr_id=1441_58568265

Lisaj514

stupidboob, that video was beautiful. Thanks for sharing

Lookingforward66

Stupidboob,

Thank you for sharing the great video. I had dbl mastectomy, no reconstruction.

I go to yoga class flat. Do quick errands flat. Only dressing up do I wear my prosthesis. I am me, with or without boobs.  They don't define me. I look at my body & am alright with scars & all.  I do the best I can with what I have. Vanity is on the back burner. 

The arthritis bothers me more than no boobs. Arthritis has already put some limits to my yoga practice. I don't push as much. Before I figured my body could take it & heal. Now not as much. Some days my joints limit my movements.  Trying recommendation of dr & others on herbal for joints. It takes a bit to work. I'll let you all know if I think it helps. 

We are all God's creatures. 

Best to All

Marsha

Stupidboob

Lisa you are so welcome......................I like to share stuff I think might be an inspiration, pick me up or a feel good stuff..............:)  Thanks for letting me know you enjoyed it.

Cocker_Spaniel

Stupidboob that was so beautiful.  Made me cry.  It's not your boobs that define you, it's whether you have a kind heart and whether you can keep people's spirits up when they are down no matter how you feel yourself.  Thank you Stupidboob for the video.    

Stupidboob

Glad you liked it Cocker and thanks for letting me know.   That is what I have always said, when people ask if I was going to have my breast replaced.  I am not my boob.  

slowloris

Well, it hasn't been a very good week for me. After 5 mo's, I got a small abscess on my abdominal flap scar. The PS thinks I'm spitting a stitch. No fever or inflammation, so I just have to clean the tiny hole and wait for it to heal. Then, the nodule on my chest has started to ulcerate. I have to make the decision as to what to do with vacation and future treatments to consider. I may just let it be for now, since I may be starting a trial.

I've had 2 rds of Haloven (4 tx). My MO and BS both think it's not working, and actually think I'm chemo resistant. 2 different trials were suggested to me, both being done at my hospital tx center. the first is where they take my wbc and alter my T cells to recognize the cancer cells. It is then injected into the tumors, 3 days later the tumor is excised to see if the tx killed it. There are many parameters to meet in this trial, and it also has a greater risk of ill effects and even death. And since it may kill only the tumor (I already know my cancer also lives in my lymph system), besides meaning I would be off other chemo's for 2-3 mo's, I've decided against this.

The 2nd trial is a glutaminase inhibitor. Apparently, cancer cells need glutamine to process in order to get their energy. Glutaminase is used to process it into energy, so if it can be inhibited, no fuel for energy = cancer cell death. I think it's call CB 839. There are fewer parameters to meet to qualify for this trial, I only have to be off chemo for 3 weeks prior, and it's more systemic. Hopefully it will work not only on the nodules, but also the cells floating around my lymph system.

My MO is trying very hard to get me in this ASAP. She ordered a CTscan for next week, If no obvious problems, then a biopsy of a current nodule, and I could start this oral med after that. Keep your fingers crossed for me.

Someone posted a link a week or so ago about a study in MS using Imitinib  (sp)  , a leukemia drug, as a new possible drug for tnbc. The brand name is Gleevec, and it is actually the med that my sister is on for CML. Wouldn't that be weird if we both wound up on the same rx for 2 different types of cancer. There was absolutely no cancer in my family history, and then within 2 yrs, 3 family members came down with cancer.(CML, tnbc, and thyroid).  Something is definitely going on around here.

Those in treatment, I hope all is going well, and those with NED, may many more years pass being cancer free.

Stupidboob

Marsha can you believe your message just showed up at 12:05am...............glad you liked the video................I want your energy.....:)

Stupidboob

http://blog.thebreastcancersite.com/the-power-of-empathy/?utm_source=social&utm_medium=bcsfan&utm_campaign=the-power-of-empathy&utm_term=20140516

 

Interesting because we have all been there on one end or the other................or both ends.

NavyMom

Slowloris:  So sorry that you are going through this.  Sending prayers and hugs your way.

jenjenl

What's up Ladies!!!!!!!!!!!!!!!  Yup Yup I'm back.  I took a hiatus which was very good for my mental state.  I see a lot of good news, bad news and new faces/names.  

Fighter - yeah girl, pumped to see your update. 

Blue, Cat and slowloris - so sorry to hear this and you know we are here for you. 

Things are going pretty good.  Kids are good, they are pumped for the insane summer fun we have planned.  Chris and I are going to st. martin in 2 weeks for 5 days to just be together and decompress from all this bullshit.  He also stopped working so we can be together as a family more.  We're finally in a good financial situation to afford this.  Our whole married life he worked nights and when we had kids it got harder on me. We've sacrificed a lot to get here and are so happy!  We have a trip to DC planned, Charleston, Connecticut, Myrtle Beach, Atlanta and the NC mountains.  

Now to the worrying part that might possibly bust up all the family fun.  I have had a swollen gland/node on the right side under my jawline.  Its that gland/node that get's swollen when your sick. My MO says its nothing but i don't believe him.  It's been this size for about 6 months, its not hard but swollen.  I have my next appointment with him early June but I also scheduled an appointment with and ENT doctor.  I want to believe my MO but I'm just not a lucky person.  In a way I don't want to know anything and just get through the summer fun but that would be sticking my head in the sand! My MO is so anti-scan so i have to beg, borrow and steal to get one, hence why i schedule an appointment with ENT, maybe he will take me seriously.  If anyone has any advise do share

On a positive note my recon is looking awesome!

Missed everyone and happy to be back.  

xo - jen

Allydp

Slowloris - I'm so sorry for all that you're going through right now. It sounds like your MO is really on top of things and determined to get you into the best trial, which is wonderful. I'm sure this is a scary and stressful time for you. Stay strong and let us know what you decide. You will be in my prayers. 

FierceBluebird

hugs slowlorris!

natL12

Sending my best thoughts and hopes to you, slowloris.

natL12

jenjenl - go with that good vacation. I'm sending hopes that the swollen gland is nothing the doctors can't deal with quickly and easily.

JAN69

Jenjen-- I have a very similar story with swollen neck gland(s).  I've been to several docotrs and had many ultra sounds.  So far I've had 4 biopsies, with none of them getting enough material to analyze.  I'm over due for my 6 month wait and see appointment with my endocrinologist at UCLA.  I do have an appointment there for early July.  Nobody but me seems to be excited about it.  Apparently glands that are so visible on U/S, come and go without logic and scare us to death.  Good luck dealing with you glands and keep us posted.  Jan

Titan

jen...when are you going to Myrtle Beach?  I think we are going in Sept. sometime