Mets to bone

[LOPSIDED]

Would like to hear from those with mets to the bone. I was diagnosed 05/2009 with met to my spine. I had radiation and my last ct 10/2009 did not show any progression, but I sure feel like I have aged to a 100 since having mets to bone.

I have not posted in over a year, but have lurked around the site reading others posts.

[Jean]

Dear Lopsided
I am happy to read that your recent test show no progression. You have been through alot which would account for the stress and that alone would age anyone.
While I do not have experience in this area I just wanted to wish you continued good ct scans.

All the best,
jean

[SoCalGal]

Are you still on chemo? That will age anyone. I have sternum mets. Fatigue is a very common result of treatments, add in a bit of depression, some aches and pains of normal aging and it's a miracle that any of us get out of bed.

I force myself to walk everyday. Walking as little as 10 minutes twice a day will boost energy. I walk about half hour twice a day. The only known and proven fatigue fighter is exercise.

The aging I've experienced is due to accelerated hormone loss, the stress of chemo, the stress of cancer and not due to bone mets per se. Hope this info helps...

[undecided8]

I also have a question about bone mets? Do they just automatically assume when your primary tumor was her 2+ that the bone met tumor is too? I had surgery to stabilize my femur and the surgeon did not order the test for her2 or er/pr status? I've heard that it can change over time? Is this possible? Thanks!

[ElaineM]

I agree with Flori and the others who responded. Cancer treatment can cause some of the problems you described. If you have the energy to cook try to eat foods that increase energy and promote a feeling of well being. If you like dairy products they might help the spine. I have a little arthritis and a little osteoporosis. I find that acupuncture helps. A heating pad on a low setting helps promote circulation to the not so good areas. Getting out in the fresh air and taking a short walk should help with the energy levels and a sense of well being. I hope you feel better.

[asahizuru]

Hi lopsided,

It does sound like you have been through a lot over recent years. You say you were on xeloda and abraxane as well as zometa and I suspect your tiredness is not from the bone mets but from the treatments. I have always found after chemos that I don't really feel fully recovered until that first year has passed.

I have extensive bone mets involving skull, collarbone, ribs, all of spine,pelvis & hips since 2002. Have had various rads to both hips, top of spine and lumbar spine. and everything has been stable on pamidronate, and then zometa. It is only the past year I have had problems with pain again and am about to have second lot of rads to lumbar spine and a soft tumour mass that has started growing again alongside the lumbar spine. I must say I am tired but that is from all the pain meds I am on just now. Hoping the rads will enable me to come off them soon.

Hope you start to feel yourself soon but be kind and give yourself time.

Asahizuru
xx

[LOPSIDED]

I am still on abraxane, xeloda, zometa. Anytime I have stopped chemo, I have progression within 4 months. I have been on my current treatment since 07/2009 and seem to be stable. My doctor feels I should stay on this treatment. He said if the treatment begans to take a toll on me, I can take a chemo holiday for a month and begin again. I'm thinking about taking a break, but am afraid to stop. Just really afraid my cancer will go wild if I give it a chance.

I guess I really shouldn't be whining, I am still able to get around okay, I drive myself to all my treatments. Let me go take an advil and shut-up.

[Bill]

Hi Sheila! It's good to hear from you. I can see you still have that fighting spirit! You hang in there, sweetie, and please know that you're in our thoughts and prayers.

[D.W.]

Hi Lopsided,

The mets went into my hip, brain, vertebrae. The only one of these that has caused me difficulties is the hip. The ortho guy said that my rt. hip has necrosis-meaning no blood supply. Meaning that if I had a hip replacement it might not work because there is no blood flow. If the hip replacement failed I could be crippled. Not nice at all.

So I am asking God what to do? The hip is painful and will only get worse(so says the dr.). But being totally crippled doesn't sound too good.

But I do my housework, cook, and take care of my kids. Can't complain (okay, maybe a little).

Best wishes,
D.W.

[felicia]

Hello everyone!
I have a question. This fatigue ever go away or have to live with her always. After I finished chemotherapy and radiation started to hurt bad all joints and now I move like an 100 years old woman . Does anyone else have these symptoms? I went to rheumatologists, I made several tests and found only osteopenia. The conclusion was that it was a side effect of treatment. But I finished chemotherapy in November 2009. 4 months have passed since then and I still feel bad.

[LOPSIDED]

I think it just depends on the person, some people recover quickly and others don't. There is so much to factor into it, for myself I am in constant treatment so I will probably always have some side effects. If you have completed the chemo & radiation part of your treatment, I think with time you have a good chance of feeling better (lets hope so anyway).

[felicia]

Thanks Lopsided.
And I suspected this, but hopefully may, however, a miracle happens at a time and you can be back as before.

Felicia

[D.W.]

Hi Felicia,

I think you need to give yourself time to heal and feel better.

Tell your medical oncologist how lousy you feel. If he won't help you or understand how you feel, then tell another doctor. Your doctor should listen to you and want to help you. They work for you.

Hope that helps a bit.

Best wishes,
D.W.

[Jackie07]

Undecided8,

I've seen survivors getting classified differently on their Her2 status during recurrences.

In my own case, I was weakly ER + and took Tamoxifen in 2003/4. But after I had finished 4+ years of Tamoxifen for my recurrence and decided to have a hysterectomy/oophorectomy so I could take Aromatase inhibitor, the oncology nurse told me that my doctor said the tumor of my recurrence was Hormone negative.

So I guess it is not that uncommon to have different cell features in our cancer journey.

[felicia]

Hi D.W.!

Thank you for your advice. I have already been to two oncologists and told them about my status and it seems that they have no way to help me. They said they have never heard that. It seems that, indeed, must have patience to see what happens next.

Felicia

[D.W.]

Hi Felicia,

I looked at your blog...do you live in Romania or are you an immigrant? Obviously I could not read your blog....I'm rusty on the Romanian language....ha ha!

Hope you are feeling good today.

Best to you,
D.W.

[Lien]

Rads can cause fatigue that may last up to a year, my radiologist told me. Ofcourse chemo is known for it's side effects also.

Exercise would be a good idea, even 10 minutes a day. Try to find someone who will take walks with you. It's not so tough when you have a friend there to keep your spirits up.

Love

Jacqueline

[felicia]

Hello D.W.!


Thank you visiting my blog and I apologize that I did it so difficult to access for everyone. Now I realize I had to do a separate version in English.
If you still want to read my story from my blog - it is a button for translation just under the HOME button. It has drawn some flags on it. If you go with the mouse on it opens a small window where you can choose the desired language and then select an online translator in the next window (the best is Google) and automatically translates all blog.

I live in Romania. That's why my messages are very telegraphic. I do not speak english very well, and it is very difficult for me to say what I really want to say. And by the way , I don't understand until now what means NED?

Have a very nice day!
Felicia

[lucian1]

te pupam.vezi ca te gasim si-n gaura de sarpe...:)) ned inseamna no evidence of desease- nici o urma de boala. ce faci? cum te mai simti? e frumos foc baiatul tau...lasa ca o sa-i joci la nunta stai linistita.i,m sorry guys i wrote in romanian language but i know felicia and i support her and all of you in your struggle against cancer.te pupam,ianis,gabi si lucian.

[Lien]

Dear Felicia,

I read the translation of your blog. I'm impressed. NED means No Evidence of Disease.
Hug your boy! Enjoy every minute with him.

Love

Jacqueline

[felicia]

Hello Lucian!
Chiar ca e foarte mica lumea!
How small the world is. What a nice surprise. How are you?

Kisses,
Felicia

[felicia]

Thank you very much Jacqueline!

Best wishes,

Felicia

[Adriana Mangus]

Undecided,

We would like to know your name...

I asked the same question to my onc., he said that it's possible to be Negative the firs time around and after 5-7 years it will change to Positive...but he said that once you test from----to--- it's highly unllikely for the tumor to mutate once again...I did not quite believe it but it does make sense. He said that down the road ---if needed--we (him and I) will have a new hormone test done--- but it's not likely I will need it.

Complicated...If you are unsure I guess you can ask your doctor and have it done just to make sure it has not mutate again.

Take care,

Adriana

[Adriana Mangus]

Lopsided..

I took a break ---3 months to be exact...there was progression --small but nothing to be afraid of. I will be going back to chemo---Gemzar possibly--and I know it will work again. Maybe TDMI trial..Not sure. I will post as soon as I find out.

I am on the side of taking small chemo breaks, to give your body and cells a rest...You are not going to have a disastorous? outcome by taking a small break.

In the past I was afraid just like you..Not anymore, taking breask has renewed me. Ask your doctor.

Take care,

Adriana

[VirginiaGirl]

Hi Lopsided,
I have mets to my bones, that's really the only place, all through my spine and hips. I finished abraxane/herceptin in November and it took care of the couple lymph nodes that went active, but I had progression in my bones. I had not been doing zometa for a while due to concerns about side effects (specifically jaw bone deterioration) but have started it again and hope it will work as well as it has in the past. I haven't had radiation to my bones, we've approached it twice and have decided to go with more systemic treatment. The initial radiation to my breast left me more tired/exhausted than any of the chemos I've done.

I know I've aged a lot since chemo and being menopausal. I have an identical twin sister (no BC for her thank god), and so seeing pictures of us together or the few times a year we get to visit is sort of painful because it's really "in my face" how much older I look than she does. It really makes me sad, so I just remind myself I'm happy to have hair (for now) and of all the wonderful things that have come from having BC, and I remember I'd rather have the wonderful things - like being closer to my husband and having a much deeper spiritual life.

Peace and Blessings,

[felicia]

Hi Virginia,
I also have the same problem. I looked at some pictures on 2 years ago and even last year and I did not believe it how much I've aged in the 9 months since I discovered that I had cancer. Chemotherapy, pain and despair have left deep marks on my face. And I'm so sad too. I look 10 years older now.

Felicia

[Catherine]

Hi Sheila,

Hey it is okay to whine. I think you sound very bright and very brave. I only had 12 weeks of chemo, and I still feel the fatigue and some of the other things I like to complain about.

Take care and all the best,
Catherine