Brain Mets Sisters

My onc first said that WBR would cause permanent hair loss, then said it doesn't always happen.  My RO said it didn't cause permanent hair loss, but the SE sheet they gave me said it was a long-term SE.  Go figure!

My fingernails were very painful on Abraxane because they were lifting off the nail beds.I'm not so sure that a vinegar soak would be so good for the nails in terms of making them feel better.  Seems that would work for sterilizing, but exacerbate pain.   I did keep them short. I had to quit the Abraxane because it just made me feel too crappy. 

xoxoxoxoxoxo

Calico

Hi Susan. I don't feel comfortable posting her name, but I'll send you a pm.

Bless you, Barb, I'm not on hospice yet, but my expectations are to get superior pain control and general comfort for whatever ails me. I'm getting a room ready in my house just for that purpose. I'll be in the room we call the hidey-hole, surrounded by pictures of family and friends. It has a TV and 2 comfortable chairs for anyone who might come to visit.

Seeing you feeling well and at peace.

xoxoxoxoxoxox

Calico

Hugs Barb. I never know what to say to these things. I hope that you find comfort in being able how to live your life and that you can enjoy your time with those who mean something to you. You are in my thoughts.

Hi, Catesmom, and yes, call the RO.  The RO talked to me about a mild headache, and the list of possible SEs included everything but the kitchen sink (of course for CYA purposes.)  They told me to call them if I noticed any changes.  I expect they'll prescribe steroids which will bring you relief.  So sorry you're having what is likely the headache/nausea SE.

xoxoxoxxoxo

Calico

Hi Calico and WW, thanks for your replies. I ended up going to the ER last night, because frankly I was scared. Pain 9/10. My RO said this is extremely unusual after just one treatment. She's going to consult with some of my other docs and see what they think. I think we are going to hold off the WBR for now. That makes my husband a little nervous, me too. At least I'm feeling better now, and the pain is gone. How far do I go with this? Kelly

Catesmom,

So sorry to hear about your headaches. Glad to hear you want to the ER. Is this your first time getting radiation? Perhaps some people have very strong reactions to it. We are all so different. I agree that they will probably prescribe steroids to you to combat any swelling that might be causing your headaches.

For me, the first treatment was definitely the most stressful. After that, it became almost routine. Extreme stress can cause headaches too. During treatments, I thought of two things that helped me. First of all, I tried to think of the radiation as the "healing light", which it definitely is. I thought of those sci-fi movies where they have healing machines that look a lot like the radiation equipment I was under. Secondly, I pictured my ROs, kind and beautiful face. She was the only one who told me, "I think we can keep you alive for years. We'll clean everything out with WBR and then, if things pop up, we will zap them with Cyberknife."

I also drank a cup of herbal tea (3 honeysuckle flower, 3g chrysanthemum, 2c water, boiled for 15 minutes) morning and night as prescribed by my Chinese medicine doctor and ate the fruits and vegetables he prescribed (longan, asparagus, aloe, okra, cucumber, red date, dragon fruit, honey). The aloe vera juice was the only one that was really hard to do. Tastes terrible!

Hope some of these tips can help you! PM me if you want more info!

Big hugs, Susan

Hi! I was released from the hospital yesterday. All of my scans were clear, no bleeding into the brain or swelling. I'm on blood thinners so they wanted to check that out. They basically decided to place me on low dose steroids. OnTuesday I will go back and see my RO and have my second WBR. They thought that possibly I could have had such a strong reaction because I was just 6 days out from chemo too and wasn't feeling great yet.

Susan, I do think stress may have been part of my issues. Aside from being nervous even after I took a Valium, it was also a stressful car ride to the hospital because we almost got in a car accident. Twice. I think I'll try your tea and like the idea of imagery. I had radiation therapy when I was 28 for Hodgkin's disease I I remember doing that and it kind of gave me a sense of control. I also freaked out a little bit at how tight the mask was, but got over that by thinking about getting a facial. 😊 thank you all for your support. It helps knowing you all have been there. Kelly

Susan, you do give me faith that I am not just doing this for nothing. It's so encouraging to hear that you have done so well, and your friends especially the one with leptomenigeal disease, since that is my diagnosis.The tea you drank, did you get that from your Chinese herbalist? Or do they have something like it at Whole Foods or an herbal supplement store? Kelly

Catesmom,

glad to hear you got through this difficult times so you could continue on your WBR course.

Wndrwmn

very sad today....

I had stage 3 Her2 positive breast cancer. About two months ago started to see weird flash lights (the one and only symptom). Was sent to brain MRI yesterday, and was told I had one brain mets 1.x cm today.

Surgeon seems to recommend surgery to remove the whole tumor, adding some radiation.

Just can't believe it, I am feeling perfectly fine, eating drinking exercising .,.. Can I still have hope for my life? Will I have a "future".

hahaha - I was in the same position a year ago. It is scary. I had exactly same symptom ( flashing zigzags) In fact I had a 2 cm lesion on edge of cerebellum I think and several smaller ones. My brilliant Onc said we are going to treat this aggressively. I had a craniotomy 10 days later to remove surgically the big lesion and then 5 sessions of whole brain radiation to remove the rest, plus he added Avastin to my chemo. So far ( touch wood), my brain has remained clear. And apart from hair loss and some weeks of fatigue, no side effects. I had a couple of months holiday and part-time work then went back full time I did subsequently discover one bone lesion (zapped w radiation) and some lymph modes ( redcucing with new chemo).

So yes there is hope and plenty of life to be lived. Look after yourself .

Catesmom,

I first bought the dried honeysuckle and chrysanthemum at a Chinese grocery store but also ordered it later on Amazon.

Here are some links:

http://www.amazon.com/Herbs-Honeysuckle-Dried-Organic-Ravenz/dp/B00OLCJJ2I/ref=sr_1_cc_3?s=aps&ie=UTF8&qid=1436512627&sr=1-3-catcorr&keywords=dried+organic+honeysuckle

http://www.amazon.com/Dried-White-Chrysanthemum-Herbal-Tea/dp/B0054FEF0W/ref=sr_1_1?s=grocery&ie=UTF8&qid=1436512685&sr=1-1&keywords=dried+organic+chrysanthemum

I would carry a thermos of it with me to my treatments in the morning and then drink another cup at night. Went through 20 days of treatments without steroids and continued to dance and do Iyengar yoga the whole time.

Big hugs, Susan

Hi Bosco:

I shaved my hair yesterday, it hurt and annoyed me having bits come out but wondered if it will grow back or is it dependent on each individuall.

It grew back straight and mostly white the first time. And I did lose eyebrows and eyelashes that time round. Second time, it grew back dark grey and curly but lashes and brows remained as normal, maybe a little thinner but nothing a bit of mascara and eye pencil can't deal with. I just keep wearing the wig - much easier in the mornings!

Good weekend all