Bone Mets Thread
Comments
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Caryn, Did you receive treatment at Stanford or did that onc agree with your primary onc's treatment plan? I would love to have the name of the doctor you saw there, that would be great! How did you go about making an appointment?
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Lindatwo,
I have received all of my tx at Kaiser Permanente in Santa Clara, CA. I first went to Stanford for a second opinion after my stage IIB dx. I was seen by the tumor board and they agreed with the tx plan proposed by Kaiser. I was dx with a bone met shortly afterwards (before I even started chemo) and saw one of the oncs who saw me at tumor board for a new second opinion. She agreed with new proposed tx plan. Both my primary onc and Stanford onc gave me two options. I chose rads to the bone met and Arimidex and Aredia. Saving chemo for some time down the road. I will pm you my Stanford onc's name and phone#.
Caryn0 -
Caryn, My doctor called UC Davis and talked to their board and got their opinion on TX for me. They ended up agreeing on a plan, so that satisfied me. My kids and several other family members are coming up and I rented a house at Lake Tahoe for a week. I've had this planned for several months, so when the doctor said I could get in to see someone at UC Davis or UCSF THAT week, I decided I would prefer to just accept their suggestions. (Don't want to make an out-of-town trip in the middle of my vacation!) Also that means I can start treatment this next week. I hate waiting! It looks like I am going to be on the oral chemo Afinitor(sp?) and the AI Aromisin. Also Zometa. Next week I see the nurses to discuss SE's, what to do to prepare, etc. I love love love my doctor. He spent another hour with us this week and has called me twice since. Dr. Chu at UC Davis had some questions about the lung nodules and there is a possibility that I will have a lung biopsy. The doctor will call me back today about that. Thanks for your help! Oh yeah, I was wondering what a one step ns reconstruction is.....and if reconstruction can be done in one step, why do some of us have to have the tissue expanders first??
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Any ladies from South Florida? Looking for resources that might be more tailored to advanced stage ladies in this area.
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Lindatwo,
Glad that you're moving on with tx.Waiting is the worst part of this bc mess. There is an Afinator thread that you might be interested in. No sure of the exact thread heading but a search should turn it up. As to why one step implants have not eliminated TE's, I think the reasons are as follows.
- You need a ps who is experienced and comfortable with the procedure.
- You need to be the right candidate. Skin sparing is a given but it is most often used on women who were smaller breasted (usually no bigger than a C) and wish to stay about the same size they were.
- Most importantly, your bc removal comes first. If anything having to do with your health makes one step not feasible, it won't be done. My ps brought TE's in to surgery in case medical considerations made one steps impossible or he didn't think the cosmetic result would be good. The first question I asked in recovery was if I had gotten the one steps. Yes, a bit vain but it's worked out well for me.
Caryn0 -
Caryn, Wow, the one step reconstruction sounds great; so much better than having to go throught it all twice. I don't think it sounds at all vain to ask in the recovery room about the one step! Yes, the waiting is definitely one of the worse parts of the bc diagnosis. It seems like I've always had to wait over a week-end for results of tests. My doctor called me this afternoon and I won't have to have the lung biopsy, so I am thankful for that! (And not having to wait until monday for the news.) I did find the thread for Afinitor & Aromasin patients, trying to get some tips ahead of time. Lindatwo
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Hi Redroan,
Sorry to take so long to reply. We went away for astronomy camp for the weekend, so I've not been on line for a bit. I have dull aches and occasional pain that feels like a burn. My hip/leg get progressively better, but my spine seems to hurt more. Of course, I did some lifting/bending over the weekend, so that didn't help. It hurts more when I first stand up/get up, kind of like arthritis. Also if I stand for a long period of time.
As a comparison, however, I now have phlebitis in the vein on the underside of my arm from my hand to my elbow from the Zometa infusion. Resting my arm on the table hurrs worse than my spine or hip. The spine/hip are more of a dull ache, the phlebitis is "Ouch! That was dumb!" when I put my arm down. I control the leg/spine pain with ibupropen. And consider myself lucky as I know others have more problems/pain than I do.
Take good care and wishing you all the best!
Terre
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Terre,
I'm in the same place that you are with leg/hip and spine. My last PET Scan two months ago didn't show anything in my shoulder but I'm finding that from the spine pain and nerves it is effecting my arm from the shoulder down throughout my arm into wrist. I can't pick up a glass to drink out of or cut food of any kind, let alone open a jar, even turning a door handle isn't possible. So I looked up exercises for such and found out that this can all be caused from spinal cancer in vertebrae. I have swelling and redness and thought that I had phlebitis in my right arm. Doctors took biopsy and said it's shows T-cells that show that I have tumid lupus, which they say on report may have come about from cancer or treatment and medication. Never heard of such!
So I understand the arm pain being so much more painful than the bone mets. But then again treatment and the bone mets seem to be the underlining cause of the lost of arm strength, swelling, burning along with pain. I'm actually seeing doctor this week to see if it's time for gamma knife surgery on spine and if that will help the arm?
I hope that you feel better soon and I just wanted to let you know I understand your situation and hope that things let up soon.
P.S. I would have loved to gone to astronomy camp.... I can't wait for the Perseid meteor shower this month. We have no lights around our home and we can sit in our sun room watching shooting stars. Every year we see if we can beat the record of the previous year. My daughters and I have been doing such since they were children.
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Hello KiwiCatMom, Thanks for your time and information. Hope you had a great weekend. Sounds interesting. I have severe pain stand up to walk and at times to sit. After walk for a bit it gets tolerable. I have 4 more rads this week, hoping to get some releif so can return to work. I thought I would try and be a super woman and not use my Fentynal patch as I didn't get script in mail as promised. But I soon found out how much it was helping, Sounds like everyones pain varies, Nothing is black and white in this dumb disease is it. Thanks again. Best of luck to you. RedRoan
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I have mets in my ribs, but the pain is really weird. It's deep, deep in my ribs and keeps getting worse. Not horribly painful, just achy. But, when I go see my doctor and she puts pressure on my ribs I don't really feel a lot of pain. Or, if one of my cats walks over my ribs or something like that. Has anyone else experienced pain like this. I'm due for a scan within the next few weeks and I am pretty sure they will find that the rib mets have spread and that I have more in my hips. Thanks for any advice.
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Laura, my bone pain was like yours.......deep and achy with nothing if pressed. Hope your scans don't show progression.
Love n hugs. Chrissy0 -
Thanks, Chrissy. Love to you, too.
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Hi Redroan and M360 and Laur and Chrissy,
Thanks for the posts. M360, I do hope your pain subsides and they sort things out for you! That sounds miserable. I'm quite lucky and I know it; not a huge amount of pain. The phlebitis in my arm is almost gone and hopefully I'll get a cortisone shot in my arthritic knee when I see the orthopedic surgeon next week.
I have rib pain too, just to the right of my spine met (L1 I think, but not totally sure). I know I had met on that rib. It's a dull ache that's just always there, kind of like when I've overdone it in the garden (pre-mets). We bought a sleep number bed and it's really helped me alot. My husband likes a hard mattress and I like something softer and the hard mattress we had made my back hurt before I had bone mets. So that's helped. I also refuse to lift anything over about 5 kilograms (except occassionally our 7 kg cat) and have tried to be more conscious of my posture (I tend to sit like a vulture at the computer).
I have to say that I feel a bit gulity because I control all my pain with ibupropen and paracematol, don't have many bad side effects, and overall feel really good. It breaks my heart to see others suffering and this is a terrifying disease.
Stargazers camp was great fun; we had some clear skies so we got to use our 12" diameter mirror telescope, fondly called "the beast" (it's about 5 feet tall). Last night, we went to a "Wellington on a Plate" event at the observatory. It was a five course dinner with matching wine, and was a "journey through the universe". One course was garlic panacotta with golden and red carmalised beetroot sitting in the middle of "saturn's rings" which were beetroot juice and vanilla creme anglaise. The dessert was amazing. It was my husband's birthday gift as he's the astronomy nut in the family. Next weekend, we're going on the Foodie Train - a 3 hour (each way) steam train trip with food and wine from the little village we live in up to another village and back. There's an hour long heritage walk at the other village, but I'm not up to doing that, so we'll just hang out in the little shops and cafes and drink coffee instead. These kinds of activities help keep me positive and is a bit of bucket list stuff that I'm doing while I still can.
I also took a big plunge and resigned from my job and have accepted another job. They know about my cancer and still want me, and are upbeat and positive about my future. The firm I'm going to does work that I'm passionate about and that helps make a positive difference for the environment. So I decided to take the risk in the hope that I can make a difference while I'm still able to.
Here's hope that your doctors are able to help and that your progression free survival continues for a long time to come.
With love,
Terre
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Terre,
Thanks for the advice. I'm glad you are having some fun. I think attitude is important. You seem to have a really good support system and I am lucky that way, too. I go for a CT scan on the 16th, and then I see my onc on the 26th, so will keep you updated on the results.
Love and hugs,
Laura
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Thanks, Laura! Good luck on the scans and appointment. I have an x-ray on the 15th for my femur from the orthopedic surgeon. My oncologist doesn't believe in scans (long story) but does look at the surgeon's x-rays. Better than nothing. I see the oncologist on the 26th too. I've asked for a referral to one of the top breast cancer oncologists in New Zealand; he practices about an hour away from where I live. I feel like my current oncologist, who is a radiation oncologist, has kind of given up on me. He wants to keep me alive and progression free, but doesn't consider any "out of the box" thinking. The breast cancer oncologist is hooked in with international clincial trials, etc. I realise the outcome/result/advice may be the same, but feel like I need to be a bit proactive here.
We'll see how long my good attitude lasts; I can't quite decide if I have a good attitude, am in denial, or am just deluded.
But I feel pretty strongly that I'm going to be a statistical outlier with regard to survival, despite all signs to the contrary. Perhaps it's because I have two friends who had "days to live" and got experimental treatments. One was in the 1970s and is still around, the other was in 1995 and is visiting us this coming Christmas. So where there's life, there's hope. Wishing you all the best for your upcoming appointments!
Kind regards,
Terre0 -
Kiwicatmom, I really think you should find yourself a medical oncologist - they are the ones who can suggest treatment and scans etc. the radiation oncologist deals only with the radiation side of things (for pain etc). Good luck with the referral!
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Kiwicatmom,
I agree with latte. I love my RO but my mo really drives all tx plans and decisions (with my consent, of course). BTW, I' m deep in to planning shore excursions during my late December cruise to New Zealand and Australia. I can't wait to visit your beautiful country.
Caryn0 -
I'm from NZ too (Wellington). Have an amazing visit, Caryn! Let me know if you have any questions about what to see and do there.
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I third the plan to talk with a medical oncologist. Radiation oncologists are fine for what they do, but they [normally] don't do chemo. Maybe it's different in NZ. Your statement that your doc doesn't like scans makes me nervous.
At any rate it is worth getting a second opinion on a treatment plan. Lots of ladies do this. They get a plan from a major treatment center and thier local docs carry out the plan.
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Thanks all! The "no scans" makes me nervous too, but he insists it won't alter the course of my treatment. He's convinced he can keep me progression free for a couple of years, but that in five years, there's a 100% chance I'll be dead. Just not quite optimistic enough for my taste. My GP said I have an attitude toward my cancer and he held up his middle finger. That's pretty much true, I think.
Pajim, it's similar in NZ, but we have the public health system, so there's less choice. If one is willing to pay for it, then more doors are opened. However, health care is more or less rationed (not as bad as it sounds). Becuase the system is a bit overloaded, they don't assign you to a medical oncologist until/if you need chemo. I do like my RO, but I want someone who's a bit more of an advocate for me and a bit more aggressive with looking at options other than infusions, femara, and radiation. The medical oncologist may give me the same advice, but at least I'd have more peace of mind. Now I just have to wait for him to have an opening.
Caryn - are you going to be in Wellington at all on your cruise? My new office is near the cruise terminal and I'd love to shout you a cuppa (i.e., buy you a coffee - or wine!). As Latte said, any advice freely given! The weather in December can be highly variable; think San Francisco in terms of layered look. It should be a blast for you!
Latte - I'm in Otaki, but work in Wellington. I'm currently working from home because our office was munted in the quake so it's in the process of moving, so I've been working from home. I'll be back in Welly next week for work though as they almost have things sorted. I'd be happy to meet up and shout you a cuppa too!
Terre
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Terre, I actually live in Israel, so a bit far for a cuppa, but I'll always be a wellingtonian at heart (hataitai girl to be specific).
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Hi.not real sure where to post this! Last treatment afinator and aromasin failed. Had more pain in hip. Mri showed fracture after 13 rads. Placed rod and pin in right femur and hip on 8-9 pain way improved tons. Mo changed treatment to chemo. Cyclophosphamide and adriamycin. Had first tx on 8-13. No problems yet. Once changes his mind says. I will loose hair then I wont. Anyone else have words of wisdom or experience? Thanks redroan.p.s. got port on 8-13 too.
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Red if memory serves me correctly Marybe was on Adriamycin and her hair grew back on it so that one is okay, not sure about the other one.
Here's hoping the combination does well for you.
Love n hugs. Chrissy0 -
I lost my hair on adriamycin. I think it was after the second tx.
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Latte just goes to show we are all different with different reactions.
Love n hugs. Chrissy0 -
Yep, that's for sure Chrissy. That's why on one hand it is great to learn from those who have done tx before us, as long as we remember that everyone responds differently and has different SEs.
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Redroan, I had cyclophosphamide the first time i had chemo and didn't lose my hair. I've never had adriamycin, but I think you lose your hair with that. Maybe it depends on the amount and scheduling, though. I hope it works to give you relief.
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What is it about 5 years? Has anyone else been given a timeline?
I was at my GP for a chest cough the other day and he also mentioned 5 years in passing - not specifically to me but to bone mets in general.
At the time I just thought that would be worst case scenario but now KiwiCatMom mentions it as well.
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Thanks for your responses. Time will tell what is instore. For me.:)
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Marie, your GP may not be up to date with his timeline. I think we have a pretty good chance of living longer than that. My husband asked the MO about my prognosis, because I was believing google's out of date timeline of 3 years. The MO said that with several hormone therapy choices and then several chemotherapy choices, I could expect to live for many years. Maybe I won't, but I'm much more hopeful now.
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