TRIPLE POSITIVE GROUP
Comments
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Cassiecat - wear pants with no metal (sweats) and you won't have to change clothes.0 -
Isn't "Forteo" given intravenously for osteoporosis?
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blownaway - from what I can tell Forteo is also an injection, not an IV. It looks like it is done like Neupogen - over a number of days, self injected. It looks to also be hormonal, so maybe why it is not as familiar for breast cancer patients?
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From what I could see, a biophosphonate(sp?) is the infusion preferred for premenopausal BC patients with osteoporosis. Forteo looks like it was used mainly in those who already have fractured something.
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Hi ladies. Since many of us here are getting close to our 5 years on the hormone sucking drug, what are your doctors saying now about 10 years. I'm on Arimidex/Anastrazole and am being told I'll remain on it for 10. I know others who are switching to another the last 5 years. However, my husband's friend is an onco in NY and he says there are basically no studies on 10 years and the long term effects of it. Not sure what I'll do when 10 years comes up.
Thoughts?
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There is a new clinical trial for early stage her pos cancer . Some of you might be interested
"The 70 patient study will be an open label single arm Phase II trial of PB272 monotherapy administered to patients with HER2-positive early stage breast cancer who have previously received adjuvant treatment with trastuzumab. Patients will receive extended adjuvant treatment with neratinib for a period of one year. Patients will receive primary prophylaxis with high dose loperamide (16 mg per day initially) in order to attempt to reduce the neratinib-related diarrhea. The primary endpoint of the trial is reduction in the incidence and severity of diarrhea.
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Jersey, you can get truncal lymphedema, mine started around my incision and under my arm - the LE therapist can show you how to do self massage to move it, mine also recommended a compression bra, which worked wonders. Sorry you are having so many side effects. I ate a lot of plain, organic yogurt, the only time I got mouth sores was the treatment that I quit eating it because I though it tasted yucky, I ate it again the next treatment, and no mouth sores. I just a few spoons a day, but it helped. I also made some mouth wash - for every cup of water it had 1 tsp each of baking soda, salt and xylitol, I rinsed my mouth with that several times a day too.
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My onco is leaning toward 10 years for the AI, he also said no studies in yet, but the tamoxifen studies recommending 10 years make him lean that way. Seems that it would work the same way. There's a group on BCO talking about that, AI's over 10 years link
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I'm still very new here. I'll be on herceptin for 12 months, along with other. I have to have radiation
Will the radiation treatment start after the 12 months of herceptin
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lhuff - radiation usually starts about a month or so after chemo ends, but while you are still on Herceptin only infusions.
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Hi lhuff!
SpecialK is right -- I'm doing radiation + Herceptin (every three weeks) right now. My MO also had me start ovulation suppression + hormonal therapy (Aromasin) at the same time.
Hope chemo goes OK for you!
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Lhuff, I'm in the middle of rads and getting Herceptin-only infusions. You can see my various dates in my signature.
Thanks for the tips and reassurances about the dexascan.
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sorry, lost my place here, going for hercepton infusion tomorrow, finally feel a little human after a few days of no major issues, minor end of day headache with a full face of acne. Has anyone heard of this? My face, forehead, neck all have zits that can pop. I look like someone hit me with something and its red and pimply all over....I am not sure what to use or do, I will ask tomorrow if this is a side effect or possible chemical burn from the drugs? Dexiscan is no big deal, I have osteopenia and know I will need the shots as with the gerd, can't take the pills and already have had 3 different bone fractures in the past 5 years.
Did any of you join the new study. Share the journey, I did, figure if I am going thru this crap, at least maybe it could help someone in the future. Ok heading to bed, sleep pretty well lately, and appetite is back, hope it continues after next weeks big guns
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jersey - are you taking steroids? They can cause acne, very common.
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Hello everyone! I hope you are all doing well. I finished my 4th TCHP treatment last Wednesday. Today is the first day that I'm feeling ok. I am down mentally today though. I just don't know if I will ever really be ok again. Right now I feel as though breast cancer has taken over my whole life and I may never regain control. I'm also so tired of trying to explain the HER2+ part of my cancer to people. And if someone ever does know about it, they look at me as though I've received a death sentence. Sorry I just needed to say this all out loud to people that understand. I don't feel like anyone understands where I am right now.
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Forteo is recombinant parathyroid hormone. Although PTH is a giant robber of bone calcium, in a giant dose, it seems to actually build bone. But I agree with Special, it isn't normally prescribed for BC patients. But actually, I don't think it is a very popular drug anyway, with all the new ones.
Lhuff, I used to go to Herceptin, get my port accessed, wait for my blood tests and then my radiology tech Suzanne would pop in and say to my nurse "we can take her now" so I'd walk across the cancer center, bald, with my port crap hanging out and go get a few rads. It was always amusing! I felt like a warrior, wandering through there bald...tee hee!
Welcome to all the newbies!
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Jerseygirl927 -- I too have osteoporosis. My MO prescribed Tamoxifen due to my osteoporosis. She said Arimidex and the others were too hard on the bones and she did not want to put me at risk for a bone fracture. I suppose my age has a lot to due with her decision,however I see her March 18th and I will ask her again why I have Tamoxifen at my age. I am now 76 years old diagnosed at age 73. Just wondering if Tamoxifen is what I should be taking.
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Eileenohio - I think Tamoxifen is what all of us osteoporosis gals take. I am now 58 and went through menopause 10 years ago, then had complete hysterectomy. My onco put me on Tamoxifen due to the osteoporosis. I've been taking it for almost 2 months and so far no side effects to speak of. I've had hot flashes/night sweats since April when B/C was diagnosed and the docs took away my Premarin. The hot flashes are not any worse or any better with the Tamoxifen. I take Effexor (started at the lowest dose and have bumped it up now to 75 mgs - still not much relief for the hot flashes. I intend to ask for another increase (not sure how long you have to wait between increases). If that doesn't help eliminate the hot flashes, I sure wish someone would recommend something that helps them.
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Blownaway- I have been on Tamoxifen for 2 1/2 years. I have a couple effects but they are tolerable. I am one of the rare ones that has a persistent vaginal discharge that requires me to wear a panty liner.I never had hot flashes but I do get night sweats not terrible but enough to make my nightgown damp,finally the worst side effect I have is thinning hair. My hair is still very thin so I still wear a wig for important occasions but otherwise I just wear a hat. I feel that the side effects are a small price for being cancer free..0 -
I now have osteoporosis but my MO seems to hate Tamoxifen. She will only prescribe it if I refuse to take the AIs
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Thanks Lago- I am going to talk to my MO about this when I see her next week.
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My MO wants me on Tamoxifen for two years before switching. Last fall I was pretty adamant about OS + AI but after a lengthy conversation with her, I changed my mind. She is really concerned about bone loss and heart issues. The heart was the biggest consideration for me since I had adriamyacin. I'm not sure I'll go the full two years though. If I remember correctly from the SOFT trial there was only a two percent difference between OS/Tamoxifen and OS/AI. My ovaries are being suppressed right now from chemo. I'll switch to OS if they decide to start working again. I'm really hoping they don't. We're checking my estrogen levels every three months to see where I'm at. I'm not sure Lago why your MO hates Tamoxifen. I know an AI does better to prevent recurrence but Tamoxifen has done a great job too. I wonder statistically how much of a difference there is between an AI and Tamoxifen for post-menopausal women.
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Mommato and EileenOhio I went into chemopause but given my family history and I was already perimenopausal (age 49). She puta me on AI from the beginning but tested my estrioal levels for 5 months. When I was having trouble on Anastrozole and wanted to quit and maybe try Tamoxifen she was pretty adamant that she wanted me on Exemestane and actually said "Well Tamoxifen is better than nothing." I don't think she likes the SE of Tamoxifen either.
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I've been on Tamoxifen since Dec 17th. My hot flashes became more intense in the beginning but eventually stopped. Now I only get warm occasionally. The only other SE is that I'm drier down south but I don't know if I can blame that on the Tamoxifen or being in chemopause. It's not terrible...a little lube helps. I also took everyones advice about using it or losing it!!
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moni731 Joined: Dec 2011 Posts: 148
Post a reply3 hours ago moni731 wrote:
Hi, I posted this in another forum, but that one is kinda slow, so I'm hoping to get some response here. Also, I read up on betadine allergy versus CT contrast and it seems that the CT contrast would be ok.
Hello everyone! I am seeking opinions as to my next move; feel free to say anything. At the end of January I had a 27.29 drawn. It came back at 53. I had not been sick and asthma in control (on inhaled steroids and inflammatory suppressants) and nothing else happening, Saw my MO yesterday. She said that she was not overly concerned as some of her patients run high. She also said that any treatment for recurrence would, in my case, be extremely difficult, if not impossible d/t severe complications the first time. Then she said 'because of the increasing high level, it does warrant follow-up testing, and did I want to know?' Said yes, I would like to know, but do not wish further treatment. With that, she asked what do I want. My choices are a PET, PET-CT, bone scan or MRI to a specific area. I have been having low back, bilateral hip aching that is worse at night (requiring changing positions at least every 2 hours) and some generalized discomfort that I can't pinpoint in right lower rib area. If I have the CT it will be without contrast as I am allergic to betadine (iodine variant). I had a PET at original dx. I'm really stuck, any advice is appreciated!
Non omnia terrentia nocent. Dx 2/10/2011, IDC, 3cm, Stage IIb, Grade 3, 1/2 nodes, ER+/PR+, HER2+
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Did you have regular CA 27/29 done throughout, and does this result of 53 represent an increase or upward trending? You can have a skewed result due to the pain you are experiencing if it is not a mets situation. I recently started to experience new and unexplained left hip and lower back pain (started in October '14) that was interrupting sleep and quite painful. I had bi-lat hip and lumbar MRI, without contrast, done on Mar. 2. Turned out to be multiple separate ortho issues - trochanteric bursitis, gluteus medius stress tears, bone spurs from T12-L1, a fatty attenuation at L-3, multiple bulging/degenerated/dessicated disks at L3-L-5, but no mets. All of that would be enough to drive my CA 27/29 higher, and it was at the high end, but still within "normal" constraints in December. I did have a CA 27/29 reading in the 60's right after chemo which was attributed to inflammation caused by chemo SE. The number returned to high 20's-low 30's within a couple of months, where it has remained. My MO ordered the MRI because he felt it would be the best imaging tool for this particular type of pain, but I have also had previous PET done for diagnostic and post-treatment. Maybe start with the MRI since they can do it without any injection? Wishing you the best.
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Thanks for answering Special K! Yes, the 27.29 is representative of an upward trend. it was in the low 20's,then mid-20's, then low 30's until about 1 1/2 years ago, then went to 48. Retested and was at 30. Didn't have it run again until 1/15 and came in at 53 (normal <38). I was telling myself that it was probably just inflammation and discussed it with a Stage lV coworker who had the same thing happen a few years ago. She said her highest number was 50 and was scanned then, which discovered 1 liver met. Well crap! Discomforting to say the least.
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Moni ~ I am following you over to this topic!
Special K ~ You mentioned that inflammation can cause spikes in the TMs. I have stage 3 kidney disease and read that it can cause inflammation in the system. I also have had an autoimmune disease a few years back so I see a rheumatologist every 6 months. When I asked her if these issues could cause a raise in TMs, she said one has nothing to do with the other. After reading your post, I am wondering if what she told me is accurate. As Moni knows already, I had a slight rise in my TMs last August and I have been a procrastinator in going to have them taken again. I had a PET scan last August and it did not show any evidence of the BC returning. When I asked my MO what test would be done if I have the same issue, he mentioned a CAT scan and a bone scan. He said the CAT scan isn't as "fuzzy" as a PET scan. I wanted to ask him why the hell he didn't do a CAT scan in the first place! On top of all my worry wart issues, my MO is moving to Los Angeles (from San Diego), so I will be seeing a new MO very soon. I always seem to be looking over my shoulder. I know I will be a wreck waiting for the results of the tests and may be hanging around bugging all of you with my worry and questions. Thanks, ahead, for putting up with me...lol!
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moni - I agree! Keep in mind that yours came up and went down previously, so maybe that could be a good sign that your pain is not mets related and your number is rising due to inflammatory pain? I sure hope so. Has your MO laid out a plan since you indicated a willingness to know? Maybe watch it and if the number continues on an upward trend then scan? Also, it is important to note that some MO do not use tumor markers because they are notorious for being unreliable. It is one of those tests that only works for some - rising numbers may mean nothing (hoping that is you!), or you could have recurrence or progression and your markers remain normal. Ugh.
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Linnyhopp, kidney problems are on the 'elevated 27.29' causation list! Along with endometrial and colon ca. If you do a quick search on 27.29 tumor marker testing, it list some of the elevation causes not d/t BC. 27.29 measures MUC1 secretion and kidneys are one of the producers.
Special K- Yes, she said I could do what ever scan I want. I will repeat the test next week and then call her. At this point, she said the baseline is too high to do nothing. She feels that "general" inflammation is not registered in this test.
Thank you for the responses!
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