Bone Mets Thread
Comments
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Hi Lorri,
I'm also glad you joined the conversation. Your experience sounds similar to mine.... I was originally diagnosed in April of 2009 - ER+/PR-/HER2-. I had a lumpectomy and radiation only. Diagnosed with mets in Sept 2012 to bones all up and down spine, ribs, pelvic bone, and a tiny spot on my liver. When I was first biopsied (at this point I was in the hospital for three weeks straight getting emergency radiation to my spine because I was in danger of so many compressions) it came back Her2 equivocal, but for some reason my oncologist insisted on a second biopsy, and then a third because she was sure it was Her2+. Sure enough, the third came back Her2 1+ and that was enough for her and for the insurance companies, and after my first two rounds of chemo they added Herceptin to the mix. I had four more rounds with Herceptin/Perjeta and by the time I was done, the tumors were totally disappearing and the spot on my liver was gone. I've been on Herceptin/Perjeta every three weeks until just recently (taking a little Herceptin vacation - long story) and have been NED since June of 2013. I have another scan in November....fingers crossed. I am also getting monthly XGeva shots.
SO - my advice would be to discuss it with your MO, or get a second opinion, or both and I would definitely suggest discussing the possibility of adding Herceptin. My understanding is that 1+ means it IS Her2+.
Please keep us all posted and let us know how the scan goes and what direction you decide to take. I'll be thinking about you!
Andrea
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Welcome, Lorri. sending good thoughts your way.
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Deanna yes I had an MRI, CT, and a bone scan in Jan which confirmed mets but it was not as advanced as it is now. I had asked my original oncologist about getting a bone scan to see if I had any reoccurrence almost 3 years ago.. His reply to me was why would you want to know your cancer is back? I did move on to another oncologist after that comment by the first oncologist and this one is at Huntsman Cancer Institute which is affiliated with Univ of Utah med center.
Yes I feel A bit uncomfortable with this current diagnosis as I was diagnosed as IDC with lobular features as a second thought. The first diagnosis was just IDC. They retracted the first DX a month later and said it is now IDC with lobular features. I don't know if they could've done anything different in terms of my chemo. I had Taxatere and Cytoxan (4) treatments in 2009. Also a greater factor is I wonder if this is the reason why I can't get these tumors to slow down. Maybe I'm going with the wrong treatment plan. I was diagnosed with ILC this time. With this obvious change it makes you wonder because my HER2 status changed as well. I don't know in terms of estrogen levels where I am on that scale. Does the chemo kill estrogen in your body? I did ask my current oncologist about having my ovaries out but he said it didn't matter. There are other places in your body that manufactures estrogen as well. And I know that. Adrenal glands, cortisol, etc.
My initial treatment plan was Femara/Letrozole I did that for almost 4 1/2 months before he took a look at one of my lymph nodes that you could see in my clavicle area and sought went from a tiny great to 5 cm. Then all of a sudden it was quite quick we have to change you to chemo. My current oncologist gave me three pieces of paper to look at and said pick a chemo it was my choice I chose a study that both had known chemo drugs one of which was Abraxane the other was a bone drug only but I could not tolerate the bone drugs only injections. After I refused to take that study chemo they put me on Adremyosin and Cytoxan. My November 6 appointment will be my fourth treatment with this current chemo I'm on.I think he wants to probably wait maybe four weeks before he does a scan again. He never said when he was actually going to do one. So I will try to nail him down on the actual date or approximate date it might take place. I'm sure he wants to let this last chemo take affect a little bit.
I am really praying that this chemo is going to reverse the tumors in the bone. I'm having increasingly more trouble with my left arm and my left leg. Even though I have had radiation to my T spine and Miles fine it seems like my left arm and my left leg are still painful/tingling. I do have pain meds to deal with overall pain and breakthrough pain as well.
Everyone have a healthy, happy day!
Lorri
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Chriisb.
Thanks you for your supportive words. I will finally be meeting with the oncologist tomorrow to discuss a game plan for attack.
You were a big help to me just now.
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Andrea I believe I should be on Herceptin! I am so glad you have a MO that perseveres and does not tell you that according to Industry Standards you do not need a bone scan until you have symptoms as I was told 3 years ago when I asked for a scan. I have read way too much here on BCO that there seen to be a lot of surprises after a few years out of the original DX that cancer/mets has reared its ugly head. it just saddened me to the point of tears how many of us are in this same boat I am not saying early diagnosis is a cure. Because it is not. I think we all understand that. But if you catch it early there's a better chance of longer survival!
Herceptin will absolutely be the topic at my next ML appointment.
I feel some days that I'm at a point where I should be checked out by an orthopedic oncologist. I have a couple of fractures in my back. i did have 5 and 7 radiation treatments in Sept. Originally when I was diagnosed in January with mets my left leg was in really bad shape and I couldn't even stand up for more than 10 seconds.
In Feb 2014 I Had 14 treatments to my L spine, Femar, and pelvis area. They did not want to radiate me up to my maximum radiation for life. I do have a compression fracture in my L spine. My oncologist asks me how my L spine is all the time. But I already did rads to almost all my T spine and L spine (T2 to T 10 and L 2 to L 5). I still have an achy feeling in my T spine to the point I have to lay down after 20 min of standing. Or I take hydrocodone if I really cannot lay down because I would like to go out to lunch with friends.
I will keep everyone updated after my Nov 6 appt going to request a retest of my biopsy.
Healing hugs and thoughts and prayrrs to all of is here. How could we function without BCO!?
Lorri
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Lorri, have you been requesting copies of your pathology reports, etc.? One thing I found is that, even though our oncs go over those results with us, it really helps to have a copy in your own file or notebook, so that you can go back and look up something like your ER % when a question arises, or when new information or even new research that could relate to your situation comes up.
Therapies are getting more and more targeted, but I'm not sure being IDC or ILC makes a difference at this point as much as ER & Her2 status. My bc was initially described with the same terminology as yours, but the final path back in 2008 said it was actually IDC & ILC side by side. When I was re-dx'd with bone mets, the concern seemed to be if it was still highly ER positive, which it is -- not if it was the ILC or the IDC -- although I've also wondered if it makes a difference.
I guess the one question I would have about your tx, is why they are repeating the Cytoxan. It sounds like you're at a top notch facility, so I'm sure they know what they're doing, but I if it turns out you're not making headway (which we all hope & pray won't be the situation!), I would probably still seek a second opinion, in the hopes that a different institution/onc would figure out if something has been missed that could help with future tx direction. Maybe even a phone consult after sending records. I believe some of the larger institutions like MSK offer that. Also UCLA, where I'm being treated, might be an option. Not exactly nearby, but tops for bc, if you feel a second opinion is something you want to do.
Hoping your scan results will be much better than you anticipate, and that the pain is somehow related to healing! Deanna
PS ~ I was just thinking, UCSF is also tops in treating bc, and might not be too far from you.
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My ER was positive, but no one ever did a tumor marker. The HER2+ came from my bone mets biopsy last week They now know that I am also Androgen Receptive which they use medication to halt these receptors in treating prostrate cancer so there are trials for BC now. So if they Taxotere me, add Herceptin injections to block the HER2+receptors, add another medication to block my Androgen and can change Tamoxifen to Femara to halt the ER+, I might make it to that 5-7 year time frame.
I think my oncologist was a bit to positive or cocky when I was diagnosed with Stage !!B - Grade 3 ER+two years ago.. I really fell like she let me down in so many ways and didn't take this case serious enough. We need to advise the early stage people to stay on top of their Oncologist with any new symptoms. I thought I was but she really just dismissed everything as muscle pain. I was taking Body Pump Class last Spring with weights. They certainly should have caught this before it invaded 50% of my skeleton.
The men in my life are not really able to support me in this because they have no control over it so that makes it a very isolating experience. I know they are scarred to death about what's going to happen.
My husband and I are trying to plan a trip before this all gets going. I'm considering leaving shortly after my chemo before my hair comes out again on day 14. We're think of the Virgin Islands.
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missingalley good idea have fun on your trip. my mom wants to do the same when she is done with her chemo.
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I got this in a Medscape email today, and I wonder how it will affect us:
A Change in Opioid Prescribing
In the latest change to controlled substance
prescribing, hydrocodone has moved to Schedule II among controlled
substances. In recognition of well-publicized reports that 99% of the
worldwide supply of hydrocodone in 2007 was consumed in the United
States,[1] the US Drug Enforcement Administration (DEA) enacted the Final Rule on October 6, 2014.This change, roughly a decade after it was first recommended, moved
the hydrocodone combination products to Schedule II, joining pure
hydrocodone products, among others. Given that hydrocodone's
proclivities for abuse, diversion, and overdose are not dependent upon
combination with other products, this change made administrative sense.The labeling change is likely to generate a slow decline in the
prevalence of hydrocodone-containing prescriptions. The change
reinforces the message from physicians that this is not a trivial
medication. It also brightens the red light in the minds of those
patients who, even when the medication is appropriate, are leery of
receiving a prescription. The added attention that this labeling change
has generated is an opportunity to enhance the necessary education and
understanding among both prescribers and the general public as to the
dangers, and hopefully the limitations and untoward long-term effects,
of these medications.Some disruptions have been minimized, even though, according to the
DEA, hydrocodone combination prescriptions issued prior to October 6,
2014, with refills may be dispensed as long as such dispensing occurs
before April 8, 2015. Many pharmacies do not have software that allows
them to dually track prescription rules. As a result, those pharmacies
have already begun requiring new prescriptions. Regardless, hydrocodone
combination prescriptions written after October 5, 2014, cannot be
refilled.On the heels of changes to state law and medical board regulations in
the past 2-plus years, some of the changes reinforce and simplify rules
for prescribing. Schedule II controlled prescriptions cannot be faxed
or called in under most circumstances. Patients on call cannot request
courtesy refills. As has been the case for Kentucky practices at least
since 2012—if not before, based on office protocols—patients who make
such requests on call cannot have them fulfilled.Clinical Challenges Increase
Although this change may, in some respects,
make the prescriber's job easier, in many respects it may
(appropriately) increase clinical challenges. Much of the hydrocodone
prescribing in the United States today, we are told, is still for fibromyalgia
and chronic headaches. The medical literature has long underscored that
these are conditions which are much more likely to be worsened, not
benefited, by chronic opiate prescribing. Chronic low back pain is
another difficult-to-treat condition in which much of today's
hydrocodone prescribing is found.Educating patients on the primary and proper roles that daily aerobic
exercise, focused muscle strengthening and flexibility improvement, and
thorough hydration can have on all three of these conditions must be
moved to the primary, central roles that they play, despite the time
consumption as well as subtle and sometimes overt resistance patients
have to these messages. Additional multidisciplinary disease-specific
messages, of course, complement these messages. It is immensely
important that this change does lead to more attention, not less.
Rubber-stamping prescriptions, not analyzing the clinical situation or
taking steps to potentially lead to a different outcome, must be avoided
as a responsibility of the profession.Therein lies a key point, however. The failure to apply or (as a
patient or prescriber) to follow through on appropriate treatment
recommendations alone does not constitute an indication for opiate
therapy. Failing to deliver on these messages is no more acceptable than
leaving patients to remain with unaddressed pain. Insurers and
government payers also bear some culpability in these matters because of
limitations that they place on physical therapy, either in required
copayments or absolute limitations in the number of covered visits, as
examples.In the long run, the change in hydrocodone labeling will hopefully
lead to greater clarity in muddy waters and would not affect access by
those who would still derive genuine benefit from these agents.
Nevertheless, this is probably an area that will require more than one
generation to entirely recalibrate.There are patients who are so far and so deep into chronic
opiate/controlled substance therapy that they may not ever be able to be
weaned. The general reluctance of most specialty pain clinics to engage
in the long-term management of these patients places a de facto
expectation and an almost no-win scenario on primary care today. Failure
to recognize and overcome this very tenacious issue with other, recent
regulatory changes has resulted in an increase in the use of street
narcotics, diversion, home invasions, and other crimes, as was predicted
by some.We can work with the new generation of graduating prescribers, as
well as treatment-naive patients and existing patients, to build an
understanding of realistic expectations for all management options as
they apply to each diagnosis/problem set. As long as opiates are
prescribed, there will be issues with addiction, diversion, death, and
other negative consequences. No policy change, no computer algorithm can
change this. This month's change has the potential to be one step in a
positive direction.0 -
dunesleeper,
Thanks for your post. Although I don't need opiates for pain relief(yet), I hope that any attempts to curb problems associated with them (which are great), will make allowances for folks like us and others with terminal illnesses.
Caryn
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I'm using them right now Caryn, and I really needed them today. I'm still hurting. Most of the time I don't take them, but I sure do want them to be there when I do. Oh well. I see the MO in December. I will find out then.
I'm glad you aren't needing them. They really can be more trouble than they are worth -- except for days like today. ;>)
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Deanna, I have path report from 2009. Have to hunt down 2014. I agree with ER+ and HER2 status as being more important.
I am ready to get a second opinion if I do not feel comfortable. Also have discussed changing my MO as well. I want to make sure after testing my biopsy again what the results might be for HER2.
It seems like I cannot slow down the estrogen. Tried Femara with no luck. Things grew so they switched me to Abraxane. That was not working so I went to Adrimyciin.
So we will see about the retesting next. If I am HER2 positive or the MO puts me on Herceptin or any if those drugs I hear Perjeta works really well on tumors. I remember my MO talking about that drug. I wonder why he would mention that to me if it is for HER2 positive people? Than again I know nothing about Perjeta either.
Kiwicatmom-thank you. I PM you in May of this year asking about the Femara you are on.
Happy thoughts to everyone!
Lorri
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Lori, You have many good questions that really feed back to the need for answers relative to your tumor pathology. If I may suggest, since the oncs follow "standard of care" in the treatment of different tumor cells and the grade of such tumors it would be helpful to ask those "why" questions...why am I taking Adriamycin etc and why is that an initial choice in my case. It would be really important to get answers on your treatment for ER+ status...and to ask if Faslodex (which is a downregulator of estrogen) was considered. Faslodex is a newer weapon in the arsenal of the target drugs. The AIs are so important also that they are choice "go tos for many of us. Lastly the Her2neu issue is vital...yes Herceptin, Perjeta and Kadcyla are so valuable in the treatment of Her2neu cancer.
My original dx was in '06..... IDC 3/22 +cells and pathology showed ER+ and Her2neu + my chemo and Radiation was followed with AIs and Herceptin. THEN last Nov. I developed a malignant pleural effusion with a dx of metastatic breast cancer ...mets to the lung. After a partial pleurectomy and analysis of cells it ws determined that it was again ER+ and Her2neu+. My oncologists and all the docs were jubilant....no kidding. I have cells that are responsive to Faslodex and Herceptin and those two target drugs have been my treatment partners every three weeks since January. Hopefully they will stall progression.
Lori, you are smart to get another opinion and find answers to all your important questions. We all need to be treated as partners in our cancer journey and included in the rationale for every treatment decision. I wish you all the very best with your treatments. We're in it together. Hugs, Peg
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Been Lurking again
seems I can't get any good news anymore. X-ray of my left humerus showed that cancer had eaten away a portion of the top of the bone below the knob...was told this Wed 10/22/2014 and sent to bone doc Tuesday now am having a rod placed in the bone Thursday 10/30/2014. Know it needs to be done but been thur so much lately and just now getting back on my feet good. Guess just saying scared. Rads will be done about two weeks after surgery. Sad part is I was seeing a bone doc since April who did not find the cancer and i mad a point of telling ever doc that i talked to in july/aug about the pain in that shoulder...they all where "its arthritis". If someone had listened and reacted quicker i don't think this rod would have been needed just rads but just seems they didn't want to listen to me. Now Ca Doc is all over the bone mets 0 -
I know. I feel the same way, liljohnnysmommy. It's kind of a helpless feeling wondering if these docs are really on top of our problems. At least the optometrist I saw last week suggested it would be a good idea to come back for the dilation "with all that's going on with [me]." I'm not sure what he might be able to see in my eyes regarding cancer, but at least he was actually thinking about it!
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Liljohnnysmommy, sorry to hear of the news you received regarding your humerus. I too am in the same situation as you. Found out on October 20th that I have a large area that has been eaten away. Difference for me is that my surgeon still has not even called for my consult and your surgery is already booked. I am so frustrated. I called there last week and they said it's only been a week since we sent your stuff off, so no sense of urgency! Yet they called me last Friday and said to get my arm in a sling immediately because I was at high risk of fracture.
I will be calling there again this morning, looks like I need to get pushy. Your surgery is already tomorrow, wow that was fast! I will be thinking of you. Best of luck to you and prayers for a speedy recovery. You will feel better once this is behind you.
Hugs, Annie
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Hello all
This might sound like a ridiculous question but neither of my oncologist ever suggested I get a mammogram done after my diagnosis in January 2014. I'm a little concerned. Anybody else have an experience like this?
Thanks
Lorri
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liljohnnysmommy ~ Good luck with your surgery tomorrow. I know it's scary, but when I had similar a thing happen (worsening leg pain over two mos. that neither of two oncs realized was a fracture until the pain became so excruciating I went to the ER), I actually now think of it as a blessing because when my surgeon pinned the femur, the removed whatever bone and bone marrow he said looked "funky," which I think gave me a huge jump start I wouldn't have had otherwise. Hopefully, you will also have benefit from the surgery you might not have gotten had they just radiated the area. You will be in my thoughts and prayers tomorrow! What time is your surgery?
Annie, I'm surprised the surgeon's office hasn't contacted you. Do you know for sure if they've received the referral? Have you called both offices? Keep us posted!
dune, have you been having any eye issues? Not to alarm you, but very, very rarely, mets can show up in the eye. Your optometrist is no doubt aware of this, and it sounds like he's top notch if he wants to do that extra-thorough check on you. I had a similar thing happen when I had a couple of teeth pulled a few weeks ago. My oral surgeon sent everything out to pathology, which I thought was brilliant. I never would have associated loose teeth with bc, but he explained that bc cells can show up in the jaw bone too and can be the underlying cause of loosening teeth, especially if it happens suddenly, as one of mine did. So I guess it's always good to rule out these far flung potentialities, and I was grateful for the thoroughness. Hugs to all ~ Deanna
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liljohnnnysmommy - good luck with the surgery. Not fun, but I know once I got my femur pinned, it helped a lot with the pain. Still sucks though.
Dune - note that some of the AIs can cause cataracts so that may be what he's looking for as well as any other problems. Sounds like he's on top of things, which is great.
Loryln - my MO does a CT scan every 6 to 8 months but doesn't think a mammogram is required unless they see something funky. He said I could have one if I wanted one, but he didn't see the need at this point in time. I did ask him about it and I'd encourage you to ask yours.
As to getting pushy with the doctors - you have every right to ask questions and be "pushy". It's your life on the line! When I switched from the MO who had given up on me to the one who's keen to keep me alive a long time, the new one asked if it concerned me that the former one's feelings might be hurt. I said, "Frankly my dear, I don't give a damn. It's my life we're messing with here." So you don't have to be rude and nasty, but you certainly need to be assertive and stand up for yourself, ask questions, and demand answers. If you can't get the answers you need, then get a second opinion. Just my opinion....
Hugs to all,
Terre
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Good info ladies. Thanks.
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I'm living day to day on a roller coaster...Tumor markers down to 55 from over 256 since April 1st 2014...last PET scan no new tumors...Noid tumors gone...spinal...brain stem...R hip....and one under each shoulder blade... and sm lesion on stomach lining...have reduced in size...so far My Stage IV METS to the bones..hard for me...I was not ready to live my 50's this way my last child graduated 2010 and that's when I was first diagnosed with II2 BC got through that then 2012 Uterus Cancer total hysterectomy...no treatment..ok until Nov 2014 started having sever migraines...never had headaches hardly ever in my life...even after a nite of drinking...
had MRI...nothing in my brain showed up...went on and on until March same year after going through Physical therapy for pinch nerve in neck...for 6 wks...nothing improved..so finally I ask my primary...who new my history to conduct more test..Like a CAT scan "HELLO"...so I had it done the end of March and with 24 hrs of the text primary associate calls and OC calls tells me I have STAGE IV Bone METS...More CANCER...OMFG!!!! my world ended that day to me...since then..radiation/Xeloda immediately....had to be removed off Xeloda side effects to intense for me...then side effects caused me to have a bowel rupture and i just came home from being hospitalized for 4 days getting treated for a infection to my bowels this was a Sat released and I'm calling 911 the following day because I could hardly stand up due to the pain.......almost died April 28th 2014 surgeon did not have answers until he opened me up..it was bad...they called my children...ending up having 2 ft of my colon removed and a colostomy bag inserted...YIPPEEE!!! so had 3 rounds of Xeloda taken of that and had a 2 week holiday and put on Taxol IV which i do weekly now and all the positive results have occurred doing this treatment...Feel good ...but am scared ...don't know my life span with this disease...I want to live to see my grandson's at least become teenagers.....I need to know what time I have...I HATE THE UNKNOWN...I have good days that I'm ok..I go to water aerobics to get my muscles toned up ...I have caregivers that come 3 times aweek...do to my limitations...My life has totally changed..can anyone give me definite answers to how long we survive this way...I don't like thinking about day in and day out...Just so scared....Thank you Carla0 -
Carla,
My thoughts are with you. You have certainly traveled a long and rough road. I wish there was an answer for you, and all of us, about survival. The reality is, no one knows. We have had sisters who were told they had only months to live and went on to enjoy many years. We've also had sisters who were doing well and swiftly took a turn for the worse and passed away. Yes, not knowing is tough, when we know what our fate will eventually be. I wish I had a better answer for you. Have you had a second opinion? Sometimes, a fresh perspective on your situation can be helpful, even if it doesn't change the eventual outcome. Take care.
Caryn
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Hi Carla, oh my gosh you have been through the mill! I'm super glad you are battling your way through it all though but you certainly have had a very rough road so far.
I hear your fear, it's palpable in your words and I sure hope you can get to a place that makes your life easier. Unfortunately it's impossible to give a true time line for this disease as it will do what it will at will but I can say that it is possible to have a good many years living with it.
I was given the 'two year' speech when I was dx but here I am five and a half years down the road and doing well. There have been changes in my world, some I hated to have to give up but I have also gained a lot of things and like you I just wanted to see my grandchildren grow.
There have been quite a few members who have lived long lives and I'm not talking five or ten, but a couple have gotten to almost twenty years before succumbing.
Stave IV is like riding a roller coaster, a treatment is working for you and the SE aren't too bad so you are riding the high points and life is good, then the treatment stops working for you and you plummet to the depths of the lows only to climb those heights again when the new treatment kicks in and starts to do good things. It's not the ideal life but it does enable us to see a lot more sun rises, to watch grands grow, to watch our own children become the people we always wanted them to be, to catch a glimpse of that beautiful butterfly, to watch that snow flake fall silently to the earth and all those little things that we didn't take the time to look at before.
There are no guarantees, all we can do is make the most of each day and hope that those days just keep adding up. I do hope that you can find some peace as when the peace comes, the fear leaves and that allows us to be happy in our situation.
Sending you love n hugs. Chrissy
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Thank You Caryn & Chrissy:
Sometimes venting helps...and shedding tears....I am going through this process mostly on my own...family distant...so my social excitement is going to get my cocktail weekly..my caregivers...and my swim class...one friend calls me daily...I really try to stay positive...but it is hard...but with encouraging words from the sister's on here...and chatting with you all...it will up beat my evening and days...so Thank you again...Love & Respect Carla
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Chrissy,
You really are so eloquent.... I love reading your posts. They just shine with encouragement and hope. I noticed your quote the very first time I saw it...."I found my peace which gave me strength" and it resonated through my entire body.... it's perfect.
Thank you for being such a huge part of BCO.
XO
Andrea
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Oh, my gosh, Carla! You have been through so much! I'm so glad you've found this site and this thread. One thing I can tell you that may not have been said already, is that treatment options are becoming more and more targeted -- to the point that any stats you come across re. survival are truly outdated -- because the women included in those stats had totally different treatment plans than we're getting today. Plus, if you go to the research forum here, you will see there have been quite a few extremely important findings in the past year or so that should lead to more innovative treatments in the near future. So there is every reason to be hopeful -- especially with the very positive results you're getting with your current regimen.
That said, it's all the more important to have a medical team that is truly up on the latest research. Hopefully, that's the type of onc you already have. But if you have any doubts about that, or if he/she isn't conveying enough hope, then don't hesitate to get a second opinion.
So glad you've found us! Hugs, Deanna
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Carla, I cannot believe how much you have been through in such a short time! It has been a trying time for you and we're all here for you, glad you found this site. It's encouraging to hear you're receiving positive results from your taxol treatment. Like Deanna said new research is leading to more innovative treatments and that gives us much hope. There are so many wise women on this site and I'm sure that has helped you as it has helped me tremendously. Wishing you healing and sending hugs your way!
Deanna I did call both the cancer centre and the surgeon to make sure they received the referral. When I called the cancer centre on Friday and told them I hadn't heard from the surgeon yet her reply was it's only been a few days. To which I replied oh are we waiting for my arm to fracture first! I called the surgeon yesterday morning and my appt is Tuesday Nov. 4th. I have to go to x-ray first and have a new one done and then see the surgeon after that. I hope they get the surgery booked quickly once I've been seen. Just when I thought I was done with surgeries here we go again! This one makes me nervous, I wasn't this scared when I had all of my other ones.
I've been having a hard time with pain as of late, especially in my hips. I'm not at all sure what is causing it. Whether it is the letrozole, or the met on L5 but oh my God they throb so badly I can barely stand on my legs. I think that bone met is creating problems in my spine and affecting my MS as well. Has anyone experienced hip pain from letrozole?
Sending love and hugs to everyone,
Annie
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Glad you have a November 4 appointment, Annie! I hope things move quickly for you if they determine that you actually do need surgery. And as far as the pain, it sounds like you might benefit from a switch in pain meds. Have you reported the pain to your onc? As you've no doubt read here, not all pain meds work well for everyone, so a simple switch or an added pain patch might make a big difference. Other than that, are you using a heating pad? That seems to help for many of us.
liljohnnysmommy, I'm thinking about you today and praying that you have a brilliant surgeon who will be on top of his game and do a great job for you! Hope you'll let us know how everything went as soon as you're up to it. (((Hugs))) Deanna
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Carla, wow, you have been through so much. I can't even imagine, but in reading your posts you do seem like a very strong woman & hopefully you will get through all this with the spirit that your writing shows you to have. I can't say it any better than ChrissyB, she helped me so much when I first arrived on this board.
Annie, I had terrible pain from Letrozole, the pharmacist was able to find me AI's without lactose in them as a filler & I found that was the problem for me, not the actual drug but the different fillers.
liljohnnysmommy, sending good thoughts on your surgery today and dunesleeper, I hope you're feeling a bit better.
I hope I haven't missed anyone, I've been trying to get caught up on the threads, but no time these days.
I'm heading to Vancouver this weekend to get a port put in, never had one before, my veins were always good when I had chemo, but I'm tired of all the pokes in my one good vein. I'm not worried about getting it put in, but anyone have any tips for me? Thanks, Dee
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