Topic: Bone Mets Thread

May 26, 2021 07:50PM NicoleRod wrote:

So happy you are home and back here :)

May 27, 2021 11:19AM BevJen wrote:

Thanks Nicole and KBL. It's good to be home, but it makes me realize how much more PT I am going to need to get better, though. Home health is coming here later today to assess my situation and to set up in home physical therapy for me.

Interestingly, when I talked with my MO yesterday, she doesn't want me to do any local liver treatment at this time. Her reasoning is that we had been focusing on local liver treatment in the past (three microwave ablations) and in the meantime, my bone mets had crept up on us in a big way and we really weren't thinking those were the ones that needed to be watched. So she wants to do systemic treatment until we can perhaps slow the cancer down and then we'll revisit local treatment if appropriate. Right now, we are planning on starting xeloda along with radiation to my hips that were just operated on and then we'll figure it out from there.

May 27, 2021 11:44AM NicoleRod wrote:

Bev....I am a little confused about Dr. S's response.. I mean I agree about wanting a systemic therapy for all the cancer (bone mets as well as liver) however...the way it sounds in your post is like she hasn't been trying with systemic therapy to do that...when in fact she was with Ibrance..and kept insisting (even when you wanted to move on) to stay on it?? Now she is saying no to Y90 or another local therapy? I have to say I don't agree...AGAIN I agree that we all need a systemic therapy BUT...if our tumor burden in our liver becomes to great or we start getting tumors in bile duct..that can lead to liver failure...so I would want the local therapy and also a systemic.....now, If you liver can tolerate that.

May 27, 2021 12:17PM candy-678 wrote:

Wishing you well BevJen. Do the home PT and kick the cancer with Madame X.

May 27, 2021 12:47PM moth wrote:

BevJen, glad you're home and have a good plan. I think with multiple mets sites it does become one of those spinning plates acts & you have to focus on the one causing the most trouble right now. With luck systemic tx will knock down all the sites. Fingers crossed for speedy improvements with strength & mobility!

May 28, 2021 09:38AM NicoleRod wrote:

so I just finished day 8 of 10 radiation forsacrum mets.....apparently if I dint start feeling better soon...(bc this is around the time I should be feeling relief he said) then my cancer is resistant to radiation....I am feeling better than when I first went but there are sometimes where it is still hurting really bad...the one improvement is I am not really limping...

I am feeling so discouraged right now. ...and scared. I mean if the radiation doesn't work...well I'm basically done. 😔

May 28, 2021 11:00AM Moderators wrote:

Just posting in case anyone may be interested:

AstraZeneca is looking for photos and and quotes to be posted on their website, Beyond Pink: Sharing Our Metastatic Breast Cancer Story

All you would need to do is:

1. sign release form

2. select a photo to share

3. write quote (Per AstraZeneca: The quote can be anything you want to share with the community to inspire others, what has given you strength, what you hope for the future, etc. Please no mention of companies or treatments.)

(No video recording at this point).

We only have till Tuesday, June 2, so if you're interested in being featured, please submit quickly

Please email Michelle.Cosgrove1@astrazeneca.com for the release form.

Thanks so much !!

May 28, 2021 05:39PM ts542001 wrote:

hi NicoleRod - i understand that feeling of hopelessness when you feel that the radiation isnt working. it takes time to work, i wouldnt feel that the tumor is radiation resistant until a few weeks after you finish and you dont have any pain relief. breast cancer is extremely sensitive to radiaion. it's not instantaneous it happens slowly, all of a sudden you realize that the pain is less. you cant look at it everyday and say it's not better than the day before. you need to look at how you were feeling when you first started the rads and how are you feeling now (after 8 treatments.). sounds like it is working, but i do understand when you have a lot of pain and they tell you you will feel better by the 8th treatment and you still have pain it is frustrating, you get so hopeful that the pain will be gone and then it's not.. hang in there. and you said that already you arent limping. that's a good sign that it's working.

keep thinking positive thoughts, i'm sure that you will continue to feel better and better. and like sondra wrote the radiation continues to work for a long time after you finish treatment.

May 29, 2021 01:52AM SondraF wrote:

The MO was surprised I was still on crutches after radiation too... I think if they haven't experienced this or are used to mostly early stage women or small mets radiation they aren't going to understand fully the level of pain and impact. It's one thing to see it on a screen and know the theory, another to live it.

Ts is right, the fact you aren't limping is a great sign. That was the first thing for me to go. My first rads session I needed partner and uber both ways, by third I was able to take the bus with him one way, by fifth I did it myself. I was still in pain, but it was not as high and I could at least move. Three weeks later we took the bus to the movies, sure, with crutches but not pain so intolerable I couldnt handle the five hour outing.

It'll get better just hang in there!

May 29, 2021 06:47AM JoynerL wrote:

Cross-posting:

Cancer Patients Develop 'Adequate' Immune Response to COVID Vax

May 30, 2021 02:08AM Mausie wrote:

Your link gives "File Not Found" - http://www.boneandcancerfoundation.org/pdfs/Breast...

May 30, 2021 03:26PM JoynerL wrote:

I've had links not open when I tried to open the link from the email rather than after opening the post on the actual BC.org site. Perhaps that's the problem, Mausie?

May 31, 2021 10:33PM cowgal wrote:

Nicole - When I had my radiation for my collarbone in Feb - March 2020, the RO told me that the cancer will not die until the cancer cells try to divide. She checked me part way through my radiation and it looked like my tumor (which was over 7 cm) wasn't responding well to the radiation but when I had my first scan in early July 2020, my tumor was NEAD. It may just take more time to get the response.

Jun 2, 2021 05:41PM BevJen wrote:

As a result of my recent treatments to my femur (complete hip replacement on R; nail/pin inserted on L} I had an appointment today with my oncologic orthopedic surgeon. He said that "someone like me" should be having nuclear bone scans at least every 6 months. He didn't identify what he meant by "someone like me" but I thought this might be interesting to folks on this thread.

My regular MO doesn't really set time frames for scans, although they tend to fall around every 4-5 months.

Jun 2, 2021 07:11PM candy-678 wrote:

BevJen- Glad you are doing some better. I have not had but 2 bone scans in the 3 1/2 years of bone mets. Last bone scan was Nov 2019, I think. My MO mentions she may order one but has not so far. We are concentrating on the liver mets with MRI's of the abdomen. But I have not had any fractures from the bone mets either.