Beaverton Or, IBC

schreutelkamp

Beaverton Or, IBC

schreutelkamp

diagnosed in June and looking for advise, support and friends going through the same 

BooBee

Fellow Oregonian here.  Sorry you have to join us.  I'm finished with treatment but I'm happy to talk to you if you need someone.  Just PM me.

schreutelkamp

Thanks for responding...I've read so many books about what to expect but it is nice to hear from someone directly. It seems that every single side effect that I could possibly have, I've had or have now from thrush to swollen feet, knees and a rash that won't go away. I'm trying to find the strength to keep positive and to push forward. It's nice to hear from someone who's done this because I do have a lot of support from my family and friends but I'm also looking for support from a survivor.

Question...did you take Taxol? I'm experiencing so much pain with this medication in my joints and muscles. I've only had one treatment of the Taxol and have three more. I'm just wondering if it's going to get any better or worse for that matter.

 Another question for you...I am also having a bi-lateral mastectomy but with reconstruction. I'm wondering why your doc advised against reconstruction?

Thank you for your time, Bev 

sadiesue

Hi- I was diagnosed with IBC in May 2009.  I live near Salem OR. I finished chemo in August and had a modified radical left mastectomy last month (also was advised to delay reconstruction due to high incidence of recurrence, sighhhh). I start radiation next Friday.  Where are you in the treatment phase right now?  Also, FYI, I ran across another person's blog who has IBC and is in the Portland area.  I don't know her but did comment on one of her blog entries. Perhaps you would find her blog helpful.  Here's a link to one her pages that have both our treatment timelines on them if you're interested:  http://lynkelley.wordpress.com/2009/10/01/my-timeline-updated/#comments.  Where are you at with your treatment?  How are you doing?  I am anxious to start and finish radiation.

Hugs to you- Sarah 

BooBee

Hi Ladies,

Eugene Oregon here.  I don't have IBC but I wanted to through out some hugs to you.

germangal

Greetings from IBCer on the other coast(New England). I  had Neulasta shots while having Taxol chemo. Between the 2 of them, the joint aches were horrible! I tried Aleve at suggestion of onco nurse, that didn't do much, but a prescription NSAID from med onc (I forget which drug) really helped me get through the 4 treatments. Don't suffer silently, ask for some pain relief.  Now that I am on Femara, I take 1000mg of FIsh Oil twice a day to help with aches - it really works & again, med onc & GP both agreed with that supplement. So, you might ask your docs about it.

And as Bonnie asked, please do keep us posted on how you are doing!

Bonnie, I wish I had known about the emu oil! I burned something horrible during rads and ended up taking a week break to let the skin heal. I volunteer now at our Radiation Oncology unit, I will mention this oil to the nurses there so they can pass it on to patients. One thing they told me about was using Kotex pads for bandages - easier to keep on and more cushioning. In addition to the fish oil, I also take the Vitamin D (I was tested & found deficient despite being a milk & cheese hound  all my life) .... Sigh!

Hugs all

Karen