Anyone recently diagnosed, Feb 2014 here

Meadow

Jules, That was indeed a long day. Rest well. Thanks for letting us know the report.

Jess, yes burned up to my shoulder, just a big o mess it was.But glad for you it is not shingles. Hand in there you are almost to that bell ringing! Do they do that at your center?

Akevia, your picture is so pretty!

optimi sounds like you are doing great. I am so glad.

And good night to everyone. Keep up the fight!

Akevia

Awwww thanks meadow!!!

jessozzie

Meadow,the only bell ringing they do here is when the next patient is due to have rads, LOL..but i must stress, this center is classed as one of the best in the world..I am very grateful for my medical team to be looking after me despite my age..we are like family here,my oncologist even visits me at home just for a coffee...

Love jess

Kicks

I burned up the side of my neck.  In fact, that area was the second deepest burns.  There are nodes in the area so they were included in the radiation area.

At the Center I went to, the is a big ship's bell right beside the walk way out of the general waiting room going into the rad section.  When you finish your last rad, as you leave, you get to ring it.  I was also presented a 'Certificate of Completion'  personally signed (with short comments) by all of the staff I had dealt with, including the Dr.

bride

I actually feel pretty lucky: it is like I've found two strong arms which are always there. This group is one strong arm. The other is my treatment center where everything is always explained and the recipes and photos/stories of the kids/grand kids fly almost as fast as the various info sheets. 

I appreciate that the members here are so very generous in sharing their knowledge and experiences.

Although I'm a long ways from RAD, my rad oc wants me to consider positron guided rad treatment. Anyone have experience with this?

And now a totally off-topic statement: last night I was told that, come Nov, I'll be a grandmother for the second time! Another reason -- the best reason -- to find ways to handle everything IBC can throw at me. A very thrilled,

bride

bride

Jules,

You asked if anyone had had a scan in the middle of neo-ad chemo. After 6 treatments of Taxol with targetted hormonal chemo, I had a mammo and a sono. Results were excellent in terms of destroying the cancer. So I was switched to FEC chemo to finish my neo-ad chemo. After these 6 treatments, I'll have repeat scans prior to surgery. Then at least 12 more targetted treatments followed by 25 rads. At least that's the current plan. 

My thinking on scans is that the more my docs and I know, the better we can defeat the IBC, so I'd encourage you to ask for scans if you have any concerns scans could address. While I don't recommend playing Dr, I do think that the more you know the better partnership you can build with your docs. I admit knowledge is also a very useful way to combat those 4am bouts of fear.

bride

Jules_NY

Bride, thanks for the info. Unfortunately my sonos are inconclusive because they can never size the tumor because it diffuse with unclear borders so they can't compare. And my mammo was always normal. So for me and my docs they don't weigh in as much. My surgeon was much more impressed with the change in my physical exam. 

Jess how are you feeling?

Akevia Are you almost done?

Akevia

Jules I was suppose to have surgery this month but I rescheduled it because I started a new job. So I'm on hormone therapy until June and then surgery. 

Jules_NY

It's amazing how all the other things in life still have to go on, too bad we couldn't just hit a pause button until this is all over!! Good luck with you new job. Enjoy your chemo free days!!!

Akevia

lol okay Jules I agree 100%!!! Thanks and I'm enjoying the chemo free daily a lot! :-)

lemonhead

can you help me? I'm meeting with the surgeon hopefully tomorrow. My right breast has suddenly (within a week) grown to 1 and 1/2 of my left, it hurts and feels heavy, the areola and nipple are darker than my left, my nipple leaks and itches, I do have some new lumps I've noticed, and my chest wall hurts when I take a deep breath. More than anything, my right breast feels engorged like I'm nursing. I do have bi-lateral leaking of my breast implants (they're saline) but that should be reabsorbing and the breast should be getting smaller, not larger. I had another ultrasound yesterday and I'm waiting to hear on it. Has anyone had similar symptoms? Thanks!

Akevia

Lemonhead your under the IBC post so yes we all had similar symptoms. It sounds like you just have a implant issue not breast cancer. I wouldn't worry to much and I bet since your implant is leaking it's just fluid build up in your breast tissue. Goodluck! 

Moderators

Completely agree with Akevia. Sounds like it is most likely connected to your breast implants. You may want to post though in this forum:  Not Diagnosed but Worried

jessozzie

Hello friends, today, saturday here in Australia.. i had my last radiation (yippeee),,25 in all, i am burnt but i am using solugel which is helping...Just like you Kicks i got to ring the bell, signalling my last radiation, we have a huge firemans bell which we ring when its our last rad..the nurses have such a laugh...i hope everyone is well...

Meadow

Happy Day Jess! Congratulations. The bell ringing was very special to me, my family came to cheer me on. I am cheering for you here in Missouri. I am ringing a bell for you here. So happy for you

jessozzie

Hi Meadow and kicks,thank you for been such good support, my wish would be to meet you all personally one day, but i relize it may not be possible,either way i have you in my heart for ever,i must admit my skin is peeling and i hope to see the end of this awful pain its causing,we may be miles apart but we are ONE...Thank you dear friends for your support once again..

Love Jess

Meadow

Yes Jess, I feel exactly the same way. I thank God for you my IBC sisters. You show me strength, courage, grace, intelligence, and the occasional "kick" in the ass! (pun intended). I would love to meet you in person too Jess, I think you are a remarkable lady. I am thankful to God Jules started this thread so we could find it together. love to you all. 

Jules_NY

First if all, congrats Jess and Meadow for finishing your treatments!!!! For me it is so encouraging to see that there is a light at the end if the tunnel!!!! I have joined a few boards but I truly feel like this one is home.

amarantha

Good news from my corner as well. I had my PET scan today, following the end of chemo and chemo-radiation combo, and to my great surprise, a very significant, if not complete, reduction was found in the little green areas that light up. Instead of three big lymph nodes lighting up, only one tiny one. There is still cancer in the breast lighting up, much much smaller;  the hard mastitis area is still in tact, but it is not clear if it is still cancerous. In any case, the surgeon feels comfortable going ahead with the surgery now. Only one little problem, the radiation burns are still oozing, so we will need to make sure that is healed before the operation (scheduled for May 20). Hopefully there will be enough time to get that in order.

Meadow

Thank you  Jules

Amarantha, great news, treatment is working. 

Akevia

Jess congrats on your last radiation treatment. I know your very happy and Amarantha that's great news that your treatment is working. I'm so happy for you both!! :-)

jessozzie

Hello friends,as you know i finished rads, but as i expected the burning is coming through now and my skin is peeling,a little blood from my surgical flap as well, but i will just have to see it through i guess,,,the sting is hurting so much i am putting heaps of solugel on,woe is me!!!,,,,but we will battle this like true warriors we are.

Meadow

oh sweet Jess. I was so afraid of that for you. So sorry! So wishing we could just hang out. Why is Down Under so far down under?!!

jessozzie

Hi Meadow,its just another hurdle to get over, but we will be ok,and i truly wish we all could be hanging out together,we could be dangerous around the town,,,hahhah

Kicks

Jess - when I burned after rads what finally got it to heal was Domeboro soaks to get it to dry up and heal.  None of the creams or even pure fresh aloe helped at all.  The entire irradiated area continued to pour fluid and the creams would be off in a matter of minutes.  Once there were scabs forming I used cocoa butter on them.

Don't know if you can get Domeboro Down Under or not (if your Dr approved it).  Here you have to go to the pharmacy desk and ask for it as it's kept behind the counter (at least at the ones I went to) though it does not require a 'script.  It is an astringent powder that you mix with water.  It can be used a soak that you stick the area needing soaked into but obviously with a mast. that's not going to work so I soaked some white T-shirt material in it.  I laid on my back with the burned area completely covered.  I did 20 min. soaks 3 times a day. 

OT - Domeboro is a very good soak for drawing out infections and healing.  One of the horses is very prone to getting heel abcesses and he 'decided' to developed a very nasty one after I had used the Domeboro to heal me.  When the Epsom salts soaks and the ichthamol drawing salve weren't working as good as usual, I decided to try the Domeboro soak with him - it worked better than anything else I had used over the years.  I have since been able to keep him from developing any that caused lameness but I now soak him with it anytime he's been out on terrain that might cause him to abscess.

Jules_NY

Holy moly. Just got released from the hospital today. I had a fever thurs morning and my blood work showed neutropenia and low white blood cells. So I had to be admitted for  IV antibiotics, tamiflu and I got a dose of neupogen. I responded pretty quickly thankfully and all my cultures were negative and my cell counts are great now. I have to continue the tamiflu and some antibiotics. I missed a day of taxol so I'm a little bummed about that but I am welcoming the break. I feel really good today got the first time in a long time!!

Meadow

Good grief Jules, so sorry! you have had a rough go of it lately, and yet you are positive and strong. So proud of you.

Akevia

Jules, Sorry you have been through all that lately but happy your feeling better now!!!

Meadow, love you pic! You're so cute! :-)

amarantha

Wow, that was quite an adventure, Jules. I'm so glad you got good care and are feeling better !

Meadow

Thanks Akevia, I think YOU are the cute one!