Bone Mets Thread
Comments
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Shannon, Glad your surgery went well, Hope they get pain under control. Push for physical therapy if they don't offer it , It helps so much. I had good news I guess from ct on last wednesday with no changes, no progression but nothing smaller, So staying with same chemo, but bad thing is my onc is not visiting home town clinic now so have to travel 2 hours to see him, but I can handle it, Redroan0 -
idk, mentally exhausted.
i was actually going to do extra chemo with him even if all my scans were good.. he was going to run caris report on my slides to see if my chemo was effective. i am thinking it wasnt.
i will get everything cleared up when i see him wed. he also said that i was her 2+ , my other docs said i was neg. i think he said that. it was just a blur after he said bone mets
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Fran,
Try to rest well between now and your appointment. Write down all questions as they pop into your mind. Are you taking someone with you to your appointment? An extra set of ears is very helpful but if not, ask to record the meeting. As to extra chemo, this is one area where more is not necessarily better. Thinking of you.
Caryn0 -
fredntan, for some of us who do not do well on AI's chemo is the next choice. I did Cytoxan and Taxotere in 2010 and then was NED when cancer came back in lungs, spine, ribs, femur and hip, first thing they did was put me back on Cytoxan because it did help first time around. AI's are the best line of defense, but there are some of us who don't respond or have allergic reactions and severe side effects that then limit us to chemo. I have gone off and then back on three times in the past five years but it's not continuous. Hope this helps. I have a port so I cannot comment on cath. I also get PET scans every four months to see if treatment is working and/or if cancer has moved to other areas or tumors enlarged.0 -
Fran,
I had never heard of a Groshong catheter, so I googled it. It does seems like an easier installation than a port and can be left in for a long time, unlike a PICC. It does require some care, on your part (changing some sort of cap), and baths and hot tubs are not recommended. You my want to ask about why he prefers this over a port.
Caryn0 -
Hi all,
Been out of touch a bit - travelling for work and then at my sister-in-law's internet free farm for the weekend. It was lovely. Now I'm in Rotorua for a conference - too bad your trip isn't til later in the year Caryn! The weather is glorious today.
Shannon - sorry you're joining our group but glad you're here (if that makes sense). I had a pin put in my femur as well - same as yours, I'm guessing. Had it done in February. Hurt like heck the first week or so, but was able to control the pain with nothing but ibupropen after about a week. I'm sure you'll do great. Once the surgery pain stopped, I have about 99% less pain than before surgery. It's so much better! I hope they get your pain under control quickly and I'd echo the others with regard to physical therapy. It helps a lot. I've been off crutches for about 4 months; my recovery was slowed a bit because of the arthritis in my knee which meant I couldn't do some of the more rigorous exercises to strengthen my leg and hip.
Still waiting for my CT scan and trip to the oncologist. He's seen my bone scans and apparently isn't worried as he put me on a "routine" call (rather than urgent) for the CT scan. If he was worried, I'd be classed as urgent. Hoping it will happen next week, but still waiting for notification.
Glad you had good news Redroan!
Wishing all of you all the best.
Terre0 -
just returned from my zometa infusion, monthly now for over 2 years. Still recovering from my 2nd prophylactic hip pinning this year, with the help of a wonderful physical therapist. It never stops, does it?0 -
Got the results of my PET scan today. The bones are doing great, but there's something going on in my lower abdomen. The MO is baffled, so I'm having a CT scan Thursday. The MO changed me from Faslodex to Aromasin/Afinitor. My doctor said there's not much in the lower left abdomen other than the colon, and he doesn't think it's that. Good Grief, what's going on?0 -
Well, damn. Have only had 3 weekly taxol, this week I'm "off." Tumor markers up 2 points (I know, not much, BUT it's the trend up that's not good in my case; 2nd month in a row). Then, I find out the reason my foot has been hurting is I have a stress fracture!! OMG, what next! I haven't been doing anything. A couple of gentle walks last week before the s/e set in, that's it! Guess the Xgeva's not working. Hair is shedding like crazy, but so far appears like I'm a person with thin hair; so waiting until I see an empty spot before I have it shaved. Anyone else have markers go up while on taxol? I'm afraid this will be the 3 rd tx that's ineffective. It's been over 18 months and nothing has made any difference!
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SyrMom, so sorry to hear that the Taxol hasn't been showing improvement. I hope this next treatment starts to turn things around for you. I'll be thinking of you, keep us posted.0 -
Sorry SyrMom, what other drugs have been tried?0 -
Femara was the only med that I had a positive response for 18 mo.; then moved on to faslodex and Xeloda - both failed. Now on weekly taxol. Not looking good, but realize I've only had 3 weekly infusions.
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maybe your markers are up because it's doing its job? Dying cancer cells can effect tumor markers too! What has your onco said?
I can relate to the foot - I've got a stress fracture in my tibia at the moment!
Sending you ((((hugs)))). The not knowing is the worst.
Nicky0 -
Thanks Mary & Nicky ... Nicky, did you injure your tibia or was it spontaneous? What do they have you doing about it? The message I rec. via the nurse was not to worry about the TMs, but I do as I know what the pattern has been for me. However, nothing I can do about it except hope it turns around with future infusions or not waste any more valuable time on something that's not working.
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angry rant- I just called the Mayo Clinic in Florida since it is closest to me and was told that they can't see me there "since it is already metastasized. would i like them to refer me to some other places, such as moffitt cancer in tampa." really?!?!?!?! stage 4 so get lost?! sorry...rant over. i made another appointment elsewhere but shocked that either that was their policy or that someone so grossly misinformed the person i was speaking with when he put me on hold to figure out scheduling.0 -
CJRT, I just cannot believe Mayo clinic doesn't take care of stage IV!!! Surely it must have been some underling who was seriously under-trained before being put on the phones.... which would make me less trustful of the whole institution if that is the case .... but right now, I am not trustful of ANY of the medical profession, and I spent my entire career involved in it in some capacity. ARGH!!! (Just thought I would help to add to the rant).0 -
Thanks for joining in the rant, Linda. I called Mayo in MN, and they DO take Stage IV in MN. She does not know why I would've been told what I was by their Florida location but offered to look into it. At this point, I will be going somewhere else anyway, but I was so annoyed that was the response I got after already taking up 30 minutes of my time between the demographic information and hold times.0 -
Sorry to jump in! My mom is in excruciating pain and still a couple days away from her onc appt. so here we are looking for others who may have had the same experience.
She was taken off Aredia because with each infusion her side effects were getting worse and worse. She was switched to Zometa while feeling good and other than a headache was fine after the first treatment. The next came with flu-like symptoms and some bone pain that was tolerable and only lasted a short time. The last 2 though have left her in constant pain throughout different bones and on and off fever and flu-like symptoms which is what Aredia had done after a few months. The thing is though that this pain is considerably worse than it ever was and she hasn't even had one moment without pain for over a month now. It's not just in one spot though; she'll have severe pain in one area that lasts a few days and as it starts to improve she will get pain in another spot that's really bad. It's been in her foot (even swelled up), her sternum, different parts of her back, her hips, her leg...
Have any of you experienced anything like this from Zometa or Aredia? At least with the final Aredia treatment her pain stopped after about 3 weeks. This has now been well over a month and makes every day things like getting up or driving almost impossible. She had an MRI just last month and there was no progression. (It was a baseline MRI as they had only been doing CTs so far). She was already having some pain at that point so we don't think this is progression. The pains aren't even located where her mets are in some cases.
She's getting desperately worried that this pain is going to be a permanent thing now. Any insight would be great.0 -
Canadagirl, is your mom on any other meds, such as an AI or tamoxifen or any chemo? Sometimes those can cause lots of pain as well, and the combination of those plus the Zometa or other bone meds may be causing a worsening rather than just one single drug by itself. We have to remember to think of the body as a whole (think "holistic") and realize that each drug is distributed throughout the entire body, each of them has a different effect on different tissues, and effects may be additive, multiplicative, or may even cancel each other out, but we try to simplify things in our own minds, trying to blame symptoms on a single drug or treatment, but in reality, it is the accumulation of ALL meds and treatments, although new symptoms coinciding with new meds is more likely to be due to the new drug.
Wish I had more knowledge in this area, I don't have the same experience as your mom with these drugs, but I did have to go off the Zometa because of worsening SEs with each infusion - had only 3 total - now on Xgeva, and due for my next one next week, keeping fingers crossed that the second one is as easy as the first round.0 -
Canadagirl, your mom may be having allergic reactions to the Aredia and Zometa.......that amount of pain is not normal with either med. I know she is not scheduled to see her onc for a couple of days but a phone call to him/her is definitely in order.
Love n hugs. Chrissy0 -
Thanks Linda. She is on Aromasin as well but her effects from that have been very limited. She was on 5 years of Tamoxifen and then almost 6 on Femara before the mets were found and other than some fatigue and insomnia she's never had problems with any of the meds. The pain has definitely coincided with the Aredia and Zometa infusions. We know that some people do experience pain and flu-like symptoms, but hers are getting progressively worse and now somewhat debilitating even though it's been weeks since her last infusion. She's scared that this isn't going to improve even if she stops the Zometa since it's been going on so long.
I hope the Xgeva is SE-free for you!0 -
Hi Chrissy. This appt. she has in a couple of days is specifically because of the symptoms. He wasn't supposed to see her again until December for her MRI but she called and explained the symptoms and this was the soonest they could get her in. Hopefully he can offer some insight. He was very surprised at how bad her SEs to the Aredia were and confused by how they seemed to worsen over time. He went out of his way to help her have the Zometa paid for because the SEs were supposed to be a lot less with it than Aredia. Not sure what else he can even do at this point.0 -
Canadagirl: I have the same response to Zometa that your Mom is experiencing. However, it's really helping with the bone mets, so I take painkillers and keep moving. The intuitive response to the pain is to limit movement, but that makes the pain worse. I'm hoping she can keep moving as much as she can, because it really helps. I'd love to know what her med team says, as my doctor has never had another patient who reacted to Zometa in this fashion.
Syrmom: It is very possible that the stress fracture is what is elevating your TMs. My chemo nurse told me of a patient who had TMs in the 50s till she broke her foot. TMs skyrocketed into the 1000s and stayed that way for about two months, till the bone started healing.0 -
Thanks BlaineJennifer! My mom is one of those people that keeps on truckin' even when she feels like crap so I know it's gotten pretty bad for her to be limiting her movement and asking me every time she calls if I have found anyone on here yet who has had a similar problem. The prescription pain meds put her to sleep so she's been flipping between ibuprofen and Tylenol for pain. It helps a little and during that time she does try to move around and get things done, but once they wear off she describes the pain as a "15 plus" out of 10. I keep encouraging her to move since she has said the pain is at it's worst when she gets up from resting.
Will definitely let you know what the oncologist says on Friday. It seems that there are very few who react this badly to it.0 -
I'll add to the rant, too. The pharmaceutical companies are the worst. I'm trying to deal with paying over $900 per month for my new med, and just got a call to make sure I wasn't on Hospice or in the hospital before they send it. I'm pretty surprised that my MO didn't warn me about the cost, too. Well, I guess he has plenty of money, and doesn't think about that!0 -
Newbie here. Stage IIIA 2002. Had lumpectomy of 3 cm tumor, right breast. Removed 26 lymph nodes, positive in 4. Had 8 rounds of chemo back to back: 4 a/c, 4 taxotere. 4 weeks after ending chemo had 33 radiation. Spent late 2003-2008 on Arimidex. Total Remission.
Remission until 2013. After over 10 years of no sign whatsoever: Diagnosed Stage IV, PET scan showed mets to skull, sternum, spine, ribs, pelvis, tailbone, upper left arm. Had positive lymph nodes in chest and pleural effusion around right lung (thoracentisis done on June 25, drained 900 ml). MRI negative for brain mets. No mets to any organs.
Estrogen positive, PR neg, Her 2 neg like before.
Treatment now: Placed on Armidex June 28, 2013.
Was supposed to start Xgeva shots in early July, couldn't due to extensive dental surgery needed.
Tumor markers high then: 898
Currently:
After Arimidex, August markers down to 415. October 14 they were down to 176.2.
New PET scan on October 21 shows significant regression in all bone mets and no progression. Nothing still in tissues or organs. VERY mild pleural effusion, nothing to worry about. Lymph nodes did not "light up" again.
Anyone else similar?0 -
SyrMom,
The injury to my tibia was spontaneous. They think it happened because I've had LE in my left leg since last November and this means that sometimes the pain is so bad I limp, putting more pressure on my right leg - the leg with the stress fracture. The meniscus is apparently in pieces, so I'm booked in for an arthroscopy to clear that out, and the cyst it caused! If it was just the stress fracture though, they wouldn't have done much. Just some physio and keeping the weight off it to let it heal itself. Interestingly, my TM's have increased by 2 each if the last 2 tests. My TMs are usually pretty accurate for me, still way down in the normal range. I also had a PET scan last month - NED. I'll have my TM's checked again on 3rd November, so I'll be watching to see if they're up again or not. Like you, I'm also on xgeva.
What are they doing for you?
Nicky0 -
I was put on Taxol as my initial chemo and switched to Abraxane. I had a PET scan in July and am now in remission. My mo started me on Zometa Infusion s early this month . I got so sick from it. Chemo was a breeze compared to the Zometa, I had a very high fever and body aches in bones that I didn't know existed. I am scheduled for my 2nd infusion on Nov 6. I am scared I will get sick again. So I will hydrate and take ibuprofen and Tylenol around the clock starting the week before the infusion. Hope this helps.
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Thanks Macyhen! My mom has had them slow the infusions to 30 minutes instead of 15 and hydrates like crazy as well. It hasn't helped. She had also taken ibuprofen and tylenol before the last infusion for the pain that she was still in from the previous one and it didn't help her. Someone on another thread told me that around 30 percent of people don't do well on Zometa and it's looking like my mom is one of them. We'll see what the doctor says on Friday. Hopefully there's a solution.
I hope things go better for you on Nov. 6th!
((hugs))0 -
I'm now on xgeva, but last year I was on zometa. I had horrible se's after the first one, my head was spinning for a week, flu like symptoms etc. the 2nd and all infusions after that were given over an hour and I had absolutely no more problems. Maybe half an hour isn't enough?
Nicky0
