TRIPLE POSITIVE GROUP

ElaineTherese

lago!

Congrats on your graduation from Aromasin! I've only made it one year so far, so I'm in awe of those who've gone much longer. Hope your foot feels better soon!

VioletKali!

Congrats on your almost two years of cancer-free living! Hope it stays that way.

SpecialK

fluff and lago - hard to know whether we would have had these arthritic issues independent of the AI drugs, unless we stop and they go away. Lago - you will have to report back once you are off Aromasin for a while. I had two breaks when I switched from Femara to Arimidex at the six month point and then back to Femara at the two year point - I definitely felt better with less joint pain and those were 2-3 week breaks. I had long standing degenerative disk problems prior to breast cancer diagnosis, and that situation has worsened according to the bi-lat hip and lumbar MRIs done last year due to sudden onset hip pain. I now have additional disks above the two I knew about, and bone spurs at the thoracic level. I just had my six-month MO visit (I have now graduated to annuals, so am not scheduled to see my MO until next March unless I have a problem) and my tumor markers are on the rise - don't know if that is due to recurrence or inflammation - have a PET this coming Saturday. I am not really worried yet, but the CA27/29 has now exceeded the top of the range for normal. This was the case after chemo - it was about 20 points higher than it is right now as chemo ended, so I know for sure that it is sensitive for me on inflammation. My MO will use the markers for trending info, but doesn't make treatment decisions off of one higher result. The PET was scheduled prior to the info on the markers - we discussed it in light of my BCI result and the possibility that Femara and Arimidex have not been particularly effective based on the genetic assay.

cchix49

I have been offered the clinical trial and have decided to go for it. Nurse said I could take a month or 2 off before I start. I am starting to feel human again and it's hard to think about more meds but figure it would be worth it. I will be taking Immodium for study to try to help diarrhea. Would love to hear from anyone in the s

cchix49

I have been offered the clinical trial and have decided to go for it. Nurse said I could take a month or 2 off before I start. I am starting to feel human again and it's hard to think about more meds but figure it would be worth it. I will be taking Immodium for study to try to help diarrhea. Would love to hear from anyone in the s

ElaineTherese

Good luck with your PET scan, Special K. Hope your rising tumor markers don't signify anything serious. My MO doesn't keep track of CA29/27 numbers; just her preference I guess. It's interesting that you're booked for a scan on Saturday. I've never been offered that option; I always end up taking off from work.

lago

ElaineTherese my MO never does tumor markers on early stage. She says they are unreliable.

fightergirl711

ElaineTherese and lago - I was told no tumor markers for me either.

momwriter

SpecialK,

Good luck tomorrow! It sounds like you and your MO are extremely thorough, and you are courageous taking it head on rather than head in the sand approach.As you said, it sounds like you just have inflammation probably from all your back issues- but even knowing that- scans are never fun and waiting is always nerve-wracking!

Nolagirl1126

Zoziana- I'm so sorry that I missed your post...Re: good/bad days on Taxol/Herceptin. My treatment is on Thursdays so my best days seem to be Fri/Sat. I feel exhausted Sunday/Monday. Tues/Wed are good days. I am capping, so have managed to keep my hair...one more Taxol to go! Then SGAP reconstruction in August...and will continue on Herceptin until Feb. every 3 weeks.

Songbird143

My doctor is looking at placing me on tamoxifen after I finish chemo and herceptin treatment. I'm researching options...I just want to not worry about it coming back

Songbird143

I think I need more supplements. My bones hurt to the marrow. I'm not sure which chemical In my TCHP is causing this.... Hopefully not the Herceptin as I've got another year of that one. I take Vitamin D and a multivitamin for now but after chemo is like to be proactive to keep my bones healthy. I'm hoping all these aches go away.

geewhiz

They will go away Song. I hurt "to the bones" during treatment as well. I think it was the taxol, not the herceptin. You will get through it and be fine.

lago

Song I was so stiff on Taxotere by the time I ended chemo I couldn't even sit Indian style. About 5 weeks post chemo I started to stiffen and my thigh s hurt less

ElaineTherese

Song, yes the taxane-chemos are rough on the bones. I did Taxotere's "gentler" cousin Taxol, and I could no longer keep up with my sons when we went scootering. Swimming was really helpful there; it helped keep me limber.

Songbird143

Thanks Iago & Geewhiz,

Good to hear! I been trying to use mindfulness to keep my thoughts positive. One more left of the rough stuff!!!

Elaine, Ialmost had Taxol but my doctor took me to the tumor board and they changed their minds. Lucky me! Lol.

Anonymous

songbird-do you have to get Neulasta? I think that makes joints hurt a lot also. I remember walking in downtown Indy with friends, while on taxol and my hip joints ached so bad I wasn't sure I was going to be able to keep going. Felt like they would t bend.

Zoziana- I always did my infusions on a Monday morning. Was hopped up on steroids after so ran errands, worked out, and was wide awake all night. Would sit all comfy in bed with my laptop playing but just awake. About noon Tuesday, I would be wearing down. Wednesday and Thursday, I was pretty inactive and wiped out. By Thursday I was starting to feel better and then able to go out with friends on the weekend. It worked pretty well in general.

Lago and Special k-I refuse to blame the arthritis on menopause and aging. I'm sticking with the AI, lol. Better story and it doesn't sound so old lady.

Special K-hope things are ok on the pet scan front. It never ends does it? Neither of my on a put a lot of faith in the readings, but I like knowing so he agreed. I would really like a pet scan before I stop anything but I'm sure I won't win that battle

SpecialK

fluff - I was surprised by the Saturday PET too, but my center has its own scanners and that branch is open on Saturdays for the half day for those who need Neulasta injections if they got Fri chemo, and also for fluids IV if they are feeling bad - my friend who did Fri AC-T always had to do that. I guess that they staff the scanners for people who can't get off work or need a stat scan. I went because I needed it done before surgery on 5/17, and my MO asked for first available.

ET and momwriter - thanks for the good scan thoughts! My MO is good about calling me as soon as he sees the results pop in to his email, and this was not a scan for symptoms so it is less anxiety producing

CassieCat

Songbird, I had some bone pain during chemo but during Herceptin-only. Herceptin was a breeze compared to TCHP.

SpecialK, my MO tracks tumor markers as well. It's interesting how different doctors take different approaches.

SpecialK

cassie - at the practice I go to TMs, CBC, CMP, Vit D are done at each follow up for all breast cancer patients. It is not a money maker since all but the CBC are send-out tests. This is the largest private oncology practice in the country and they have developed this protocol even though it is not the recommendation for following early stagers. I assume they have reasons for this and I like the level of scrutiny - at least so far, it has allowed me to feel like my NED status is being confirmed regularly. Hope that is the case beyond next week!

KateB79

Songbird, Taxotere made me hurt all over, pretty much all of the time. I'm with others, though: it goes away. I'm just under six months out, and I feel pretty damn good, all told.

I take tamoxifen. It is what it is. Other than hot flushes and creaky knees, I feel pretty okay.

Hang in there to all who are in the throes of chemo. It gets better.

Bluefrog76

I've been away from this thread for a bit and was disappointed that I missed out on the massachusetts heritage cameradrie.

Lago--I too am from 20 minutes southeast of Boston, but really only if you're speeding. I grew up in Bridgewater. My mom now lives in Onset on the Cape. My in-laws are in Rockland and Hanover. I went to UMass Amherst for undergrad and Suffolk for grad school. I don't have the accent unless I'm "wicked tiyad".

Francesj19

HI Ladies, I have been away a bit. One week post treatment #5 with a dose reduce and removal of Perjeta and WOW~ What a difference. In the past, I would not have even been able to stand up or move from the pain today. Other than fatigue, minor bone pain, a few stomach issues and this dang blurry vision I can handle! this is manageable.. I wish that they would have done that sooner. One more to go.

lago

Bluefog yeah 20 minutes to Bridgewater! Yikes you must be speeding. To Randolph it just needs to be no traffic. Try a glass or wine or 2 and you staht talking Bahston too. My sister lives in BalaCynwood

Bluefrog76

Lago:Our first apartment was in Randolph. Mill Village.

Songbird143

fluffqueen,

No I've been very lucky. I've had good labs and only a deficiency in iron & vitamin D during chemo. Not so lucky with having minimal symptoms. For days 7-10 after chemo, I have fatigue, bone pain, GI issues( nausea & terrible diarrhea)... The past 2 chemos have included shortness of breath though my echocardiogram before this all began showed no problems with my left ventricle. My doc/ once will b ordering another echocardiogram before I start radiation and continued herceptin. I think my body is just tired.

Songbird143

Cassie cat... Good to hear. That's what i am hoping.

During this chemo it feels like this is the reality of my new life... I keep having to remind myself that this is the temporary situation to get to the healthy me!!

Songbird143

Francis j19-Good to hear! the bone pain has been the hardest part for me as it pretty much stays during chemo whereas the nausea & Gi issues are only there the first week or so after chemo.

Have you had surgery yet? I had a lumpectomy first due to my choice to remove tumor asap.

One chemo left on May 11!!!! Then radiation & continued Herceptin.

Health23

Quick question. Is there anyone out there with Triple positive stage 1 too small for chemo/Herceptin

Health23

Quick question. Is there anyone out there with Triple positive stage 1 too small for chemo/Herceptin

Francesj19

Songbird- I did have a lumpectomy in January. I was not given a choice. The surgeon felt the biopsy was not conclusive which was right. I often wonder that I wish I had more time to slow down and ask should I have had a mastectomy?