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Mommato3

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!!

moni731

moni731 Joined: Dec 2011 Posts: 148

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3 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+

SpecialK

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.

moni731

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.

linnyhopp

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!

SpecialK

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.

moni731

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!

Jerseygirl927

hi gang, not sure what your discussing but back to my acne. No steroid other than one for main chemo infusions, they think maybe I am allergic to the aloe juice I was drinking for the sore mouth. Go figure. I stopped it about Wednesday, but acne has not cleared yet, so not sure if this is a correct diagnosis. I cannot take tamoxifen in the future due to previous blood clot history.

Hair coming out, trying not to touch it, wearing scarf to bed to keep it in tack, still not prepared to go bald. Yikes, you would think a grown woman could handle this, but guess I am more vain than I thought . Went to a group BC meeting, learned what a mug ashcan was... Whew way too much to absorb since this whole thing began. Ok gang , going to get a descent nights sleep

SpecialK

The steroid you get for chemo is enough to cause acne. If the acne calms down right before the next infusion and then flares again right after, it could be the steroid or the chemo itself.

Moonflwr912

Jerserygirl. I'm going to assume the mug ashtray is a MUGA scan.... LOL and sorry about the hair. It does come back mostly. Hugs. Most of us buzz the head because losing hair all the time sucks. It gets in your mouth and everywhere.

CassieCat

Jerseygirl, losing my hair was very hard for me to deal with. Vain? Who cares. It is difficult for some people, more difficult for others. Now, at 3 months after chemo, I have thick hair regrowing and some people have even said they like it at this very short length. I miss my very long hair, but it'll get there. I think I buzzed my hair to about half an inch a few days after my second infusion.

ShepherdB

Hi Jersey Girl, I also had terrible acne after my second chemo. I was sent to the dermatologist and after consideration, she believed it was from Taxol. It was recommended that I use Domeboro solution soaked wash cloths on my head to alleviate the pain and was prescribed Minicycline for the acne. My MO then decreased my Taxol concentration for the next 4 chemos. The acne went away and I had a PCR at the end of chemo/surgery.

emily_the_cat

jersey girl - I also had acne during chemo from Herceptin/Perjeta - lots of tiny whiteheads that would just pop up out of nowhere. My chemo nurse prescribed clindamycin (sp?), a topical ointment. It did the trick, and I haven't had any since, even though I'm still getting the drugs

Jerseygirl927

well the hair went today. Hubby buzzed it as it was coming out in clumps, so instead of dealing with the drain, pillow and clothes it went the way of the clippers. As for the acne, I don't think it the aloe juice, but the chemo, it's still with me and I gave up the juice Tuesday. I will ask the dr to see if taxol might be decreased, or an ointment prescribed. I go thurs for second chemo, and if it's still with me has to be chemo drugs in my humble opinion

Anonymous

Blownaway-I started on tamoxifen as I was pre menopausal. The worst se was horrendous hot flashes in the day. I tried everything, including Effexor and none of them really worked well. Right at three years, I had a bad Pap smear with endometrial cells that shouldn't have been there. Not cancerous. Ob/gyn called my onc and I was switched to an AI immediately. Ob/gyn doesn't like tamoxifen, but my onc was fine.

My old and new onc were leaning toward ten years. I asked the new one his thoughts about 3 years of Tamox and if that counts in the total. He said let's talk at five years, but he really felt like five years minimum on the AI.

Moni-a lot of oncs, (both of mine included) don't feel the ca27.29 is accurate. I get them anyway, and the new onc says he will do them, but he says there are too many variable that cause changes. He went on to add that they have all this info coming in, especially new genetic tests, but even if it shows a mutation or something weird, they don't know what to do about it. He feels the next ten-fifteen years will bring extraordinary information and treatments.

I get prolia shots. I asked the new onc when they decide you don't need them anymore if your density comes up. He said good question, lol. No real answer. He suggested a dexascan every years since mine wasn't very bad to check. He also said they have found that if density is going to drop, it does so for the first couple of years and then slows way down

formydaughter

For ladies post Herceptin - when you finish, do you feel better? Or do the AIs or Tamox keep you feeling the same way? I'm feeling so tired all the time. And achy. Since I'm on both, wasn't sure of the culprit. My MO swears there is not a cumulative feel bad component to Herceptin, but I'm feeling like there is. (Or maybe hoping so, so it will go away).

SpecialK

formydaughters - I did feel better once off Herceptin only - I started to have low grade headache and fatigue toward the end. I was already on Femara, but could still perceive an improvement in how I felt once the H was done. I felt so much better a couple of months after chemo ended that the Herceptin SE seemed minor, but I too felt there was a cumulative blah feeling the last few months of H. 

formydaughter

thank you Special K! You make me feel better!

Mommato - I'm back to Tamox. Per SOFT, we added OS then switched to Femara. My MO just moved me back to Tamox. He hadn't perceived a big difference between arms 2 and 3 of SOFT (both having OS). On femara, I was more achy. Depression significantly increased. So did hot flashes. I wanted it to work and kind of felt like we should give it more time. But he said that SEs wouldn't improve in his experience. I wasn't able to get out of bed and just slept for 4 days at a time (nice relief from insomnia, but for major depressive episode) I couldn't even drive my daughter to school, so she was staying home into until my sister figured out what was going on and rescued us.

Jersey girl - I got acne after chemo, when hair follicles and natural oils came back. I'm still battling it and it's much worse than when I was younger and in different new places. Strange stuff. My pre cancer Dior regimen no longer worked. I tried proactive, but even used 1/2 time, was too harsh. I'm now on Neocutis and loving it. It's from my PS office. The only thing I haven't yet seen results for is my bright red cheeks that appear late afternoon

Mommato3

formydaughter, I'm glad to hear another MO say the same thing. She had spoke to two other MOs and they agreed with her. We all want our treatments to have minimal SE but sometimes it doesn't. Don't feel bad. You certainly don't want that depression! Tamoxifen has been around a long time and has a good track record

Chaga

Good morning,

I've been searching for other triple positive's and I'm happy and relieved to find the group. I've already completed my 8 weeks of AC chemo drugs. My blood count was way down waiting another week before I start 12 weeks of Taxol and Herceptin.

lago

Hi Chaga. We're all here

ElaineTherese

Hi Chaga!

I took a break between AC and Taxol/Herceptin too! Hope your blood counts go up!

Mommato3

Welcome chaga, the weekly Taxol was so much easier on methan the AC.

CassieCat

Welcome, Chaga!

sophie14

Hi Ladies ... I hope everyone is doing ok ... I finally (after a 5 week wait )had my 4th and last A/C treatment Tuesday and a Neulasta shot on Wednesday. My white blood count dropped to low and it took awhile to come back up for treatment. On March 31st I am suppose to start Taxol once a week for 12 weeks along with Herceptin and Perjecta. I think I am not looking forward to all the steroids. The hot flashes are already back, ( 60 years old ), the bone pain is rough, along with the fatigue and neurothopy in hands and feet. Gee, I can't wait for it to increase ... just kidding ...Is a MUGA scan better than an echocardiogram to check heart functions ? ... I had an echocardiogram before I started treatments. The PA said MUGA scan this time then changed it back to echocardiogram.

Anonymous

Sophie...I had echos every three months during herceptin. Didnt have an muga, but my levels, while dropping, never dropped out of normal. I think a lot of docs consider a muga the gold standard.

GingerChi

Hello everyone....I'm new here and just wanted to say hello. The more I read, the more I realize there's lots to learn. I knew nothing about breast cancer before my DX. I had BMX 3 weeks ago, but have not met with a MO yet....I'm trying to get that set up this week. I'm stressed about treatment since I don't know what the MO will recommend. I have an appt with my BS tomorrow and should get my last 2 drains out....yay!!!

Hugs to all!!!

SpecialK

Welcome ginger!  You will likely be offered AC-TH, which is Adriamycin/Cytoxan, then Taxol/Herceptin (maybe with P, which is Perjeta), or TCH, which is Taxotere/Carboplatin/Herceptin (maybe with P).  I am curious whether anyone ever mentioned doing neoadjuvent chemo so that Perjeta could be included since you had a 3cm mass.  Yay for getting drains out!  You will feel much better when that happens!

knmtwins

formydaughter - I'm on Herceptin and nothing else, will start Tami probably tomorrow. Last Chemo was Oct 29. My ears still ring, I still get some visual floaters (but reduced since chemo) my fingers, wrists, hips, knees and anckles are 'arthritic', I'm fatigued, but no where near as bad a 6 weeks after last chemo, still have some neuropathy in feet and toes.

knmtwins

Welcome Ginger and Changa.