Brain Mets Sisters
Comments
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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
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Catesmom,
WBR can cause permanent hair loss but I don't think that's the norm. I had 20 days of WBR and my hair came back. It's a little thinner on the top but no one would be able to tell but me. You probably won't lose your eyebrows or eyelashes. I had my eye radiated at the same time and didn't lose them. They can program the machine to avoid your scalp, eyebrows and eyelashes. These machines are very precise.
For me, the taste thing came back a couple of months after treatment. Before that, I lost 30 pounds because everything tasted like cardboard. I went vegan after my initial diagnoses but had to start eating meat to keep my weight up. A year later, I still haven't gained the weight back. A good thing since I was 30 pounds overweight to begin with. I tell people I should write a book "How to Lose 30 Pounds in 4 Weeks with WBR". :-)
Leggo, Can you post the link here? I'd love to read about her!
Cheers, Susan
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Hi Susan. I don't feel comfortable posting her name, but I'll send you a pm.
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thanks calico. Well dear friends I am moving on to the hospice thread. I just got a new hospital bed in my home. The latest goal now is to be comfortable thanks for your support dear friends I am moving on to the hospice thread. I just got a new hospital bed in my home. The latest goal now is to be comfortable thanks for your support and good luck to everyone0
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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
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Hope you are able to find comfort and peace Barb! Please check in when you can and let us know how you're doing.
Big hugs, Susan
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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.
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Hi everyone, I had my first WBR treatment today and now I have a horrible headache. I took some oxycodone without any help. I also am nauseous. I've been reading through others post while they are going through this and it seems really fast to get a headache. I know some people have needed steroids for swelling. Does this seem really fast for swelling? Should I call the RO??? I would appreciate any thoughts. Kelly
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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
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Catesmom,
steroids helped me ease the pain after/during WBR. Call your RO. It reduced the pressure in my head.
Best wishes
WW
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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
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So sorry you are having a bad time Catesmom
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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
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Hi, Catesmom, sooooooo glad time has given you relief. That's good that the docs confer on this and take a timeout. Seeing you getting answers and treatment that doesn't debilitate you!
I have 2 more WBR to go. I don't have what I think of as fatigue, but have sleepiness. With fatigue, I feel like I have a low-grade flu, and for me, that's much worse than just feeling sleepy.
xoxoxoxoxoxoxo
Calico
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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
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Catesmom,
Ah. I remember that well. The panic when I first experienced how tight the mask was. Later, I worried that it had become too loose. I lost so much weight, even my face became smaller. By the end of my 20 days of treatment, it had become routine. My technician's were so kind, I actually missed seeing them every day when the treatments were over.
You will get through this and I have high hopes for you since I have seen brain radiation get rid of my 12+ brain tumors and have seen the efficacy of the treatment in many others including a friend who had leptomeningeal disease. It's got to be easier than brain surgery!
Big hugs, Susan
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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
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Barb, I wish you peaceful days knowing that you've made the right decision for you.
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Catesmom,
glad to hear you got through this difficult times so you could continue on your WBR course.
Wndrwmn
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Thanks wndrwmn, but I just want to call you wonderwoman because I finally figured out yourcode name!! Sometimes I'm a little slow to pick things up.:). I am feeling much better today. Kelly
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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".
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Dear Hahaha, I'm so sorry for your bad news. I'm pretty new to these brain mets to and I understand how scary it is. I am probably not the best person for advise here, but do know there are others who have done very well. I'm sure someone will post something soon. Take care! Kelly
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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 .
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hahaha- I had two lesions in 2012. Ihadgammaknfe done to them. I had brain surgery to check on one of my residual spots. They removed it and it was only necrotic scar tissue. So no new cancer in my head.meds and radiation worked for me. 2.5 years later I am stil clear I my brain. So I will behioeful for you.
You'll find much support here
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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:
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
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I'm sorry for your scary news, hahaha. I had a brain met that was removed in February. It actually caused me to have a seizure and that's why they did surgery on it. 2 neurosurgeons and 2 oncologists didn't think it was a met until surgery revealed it was. Thankfully they were able to remove it. I had GammaKnife on the surgical bed in March. I just had my follow-up brain MRI at the end of June and its NED. We'll continue to monitor every 4 months for the first year.
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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.
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Hi Smiley, good to hear from you. I was asking about the hair loss and most people said their hair grew back in, thinner though. I was hoping you would skip the hair loss. I was also told that it didn't really affect eyebrows and eyelashes. How are you feeling? Kelly.0
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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
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Bosco 19 - Thanks so much for your encouragement! Do you still see zigzags after craniotomy?
Catesmom - Wish you good luck too!!
leftfootforward - Thanks so much for your support!
Goodie16 - Thanks for sharing your story, glad you are fine now.
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