TRIPLE POSITIVE GROUP
Comments
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Yes, yes, yes - get a TSH test done! Had mine done this past week so I have a baseline before rads. Came in at 1.3 which is good but just goes to show I can't blame this extra 10kgs of weight on my metabolism - darn!
I also agree that everyone should expect to be sad sometime. It's OK to be sad. Unless I had serious clinical depression I would stay away from anti-depressants if at all possible...
Hugs to all of us trying to find our way through this crap...
Jenn0 -
Ashla, I had a very hard time mentally/emotionally with rads, too. I also broke down crying 2 times at rads. So just another person to tell you you are not alone with these feelings! I started adding yoga and did a bit more walking near the end, and it truly did turn me around! Also, I've been doing some of these great meditations during chemo - found them very helpful physically and emotionally. They have one for rads, but really any of them are good. Perhaps check them out? I wish I would have known about them when I was going through rads.
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Ashla, im sorry you're having a tough time. While I was pretty much an emotional mess from diagnosis, it hit me the hardest when chemo ended in february . Not sure why. I had weeks of crying several times a day and just being so sad all the time. I started seeing a therapist in april. Ive also been doing yoga at least once a day. I still have my moments of panic, fear, sadness, anger, resentment, etc but I feel much better than I did a few months ago. I hope you find something that works for you.
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Ashla, I am on TonLee's side on this. I am pretty much anti-drug as often as possible. My DH is the one who gets on me to take my migraine meds as soon as I mention a headache; I would suffer thinking it would go away. Same with being blue, HOWEVER, a migraine is physical, the blues can be, might be, maybe not. Sometimes we are blue because things are sucky in life for a time. So, we "roll with it baby" and when the sucky moment, hour, day, week is over, we aren't blue.
Check the physical first, then you can make an informed decision. And that is one of the things BC is teaching all of us; read, learn, research.
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Ashla: The emotional thing is SO normal with all we have been through. I went through the tears just pouring for no reason....my onc experienced this with me and asked if I needed anything many times and I just didn't want to take the drugs...lord knows we've had enough of them. Finally, I took the prescription but I never took any of the medicines. It seemed to start subsiding every so slowly and I'm hoping that happens with you too. BUT, if you need them I would suggest you take them if it gets to a point where you can't deal with it. About once every few months, I get feeling really antsy and take half of a .25mg xanax and that helps. I'm getting further and further out from taking those. What we've been through is so tough! You'll get through it!!!
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ashla i had a really difficult time with rads, unlike with chemo where you have some good weeks i felt exhausted ALL THE TIME, really worn out. The few times i had rads and H, well that was double whammy. I was out for 2 days. And the sadness is so normal. Actually cried with my hubby the other day after #11 H, i just feel crappy, I am so tired, my joints ache, my stupid hair is taking forever to come in....I don't remember what its like to feel normal/look normal. I have my good days and not so good days, I think we all do. I have good friend diagnosed same time as I was, we call each other "roller" and "coaster" depending on who is up or down that day
Hang in there - 2-3 wks after rads you will start getting your energy back
kudos to all on an exercise program. I was super fit b4 diagnosis, i did kickboxing and was a runner. Now it takes everything i've got to go for a longish walk. I am hoping i can kick my butt into gear soon?
jenn could you have avoided breast rads if you had a bmsx and then just did the axilla, just curious
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Just want to point out that in my comment I did say that I wouldn't take them UNLESS I had clinical depression... Certainly did not want to offend anyone that does have that diagnosis because in those cases medication is very much appropriate :-)
Jenn0 -
kayb, I hope I didn't offend you; I do understand that there is clinical depression. And it should be treated as a disease, because it is one. As the wife of an insulin-dependant, I know how important drugs are. I am speaking from personal standpoint and I take drugs as a last resort. I think what Ton and I were saying was do some digging first and see if there is a physical reason for the depression. That's all.
And TonLee, if I put the wrong words in your mouth, you should kick my butt!
edited for spelling
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Kayb
When we post on these boards it is important to remember that those who respond are giving their own opinion based on their knowledge and experience. I come to this site because I value the shared experience of women who have been through this crap. Tonlee has recently shared some of her own research with me. I can choose to read it, go with it , ignore it or seek medical opinions 1,2, 3 etc. My point is we must be our own advocates and not come to rely upon any individual as the fountain of all knowledge.
I respect your point about clinical depression. taking any drug is a very personal decision and I think Tonlee gave great advice, from her own personal standpoint. I fail to see how anything she said could be regarded as offensive.
Essentially, this board is a support group. When genuine errors are made (and we all make them), then it is appropriate to point it out politely and move on with the discussion. You will always find someone on here whose opinion and it is their opinion, contradicts with your own. Chemo or no chemo for small Her 2 tumours is one example. Lago puts it right when she says: do your own research, take it to your medical team and then make your own,informed opinion. That why you can't be offended by anyone.
Liz0 -
Thanks to all my friends for your invaluable advice and your willingness to listen and respond re my recent increased BC blues .
I'm fairly certain that I'm older than all of you..I'm 63. Most of my life and until very recently, I was averse to prescription meds and even most OTC meds opting for the natural healing processes . I suffered through 15 years of hormone related migraines and only used ibuprofen as relief because I didn't want the stronger meds.
I discovered through this BC process that I would have been better off taking the new migraine meds than ibuprofen because using so much ibuprofen created bp , dehydration and irregular heart beat issues.
I still feel that it's imperative that each of us question the need and side effects of any meds we ask for and are prescribed. ( Not so easy when you're in the middle of chemo treatments and chemo brain) I however believe that these new anti depressants are a very valuable aid to many people. They are probably overprescribed but I have many friends who really suffered...and mental issues result in real suffering ...through phobias as well as bouts of depression some chronic and were really helped by meds. These friends had social phobias, agoraphobia etc that restricted them severely and effected the quality of their lives dramatically. As a result of seeing these friends progress I have changed my thinking.
It never occurred to me that combining the Herceptin with rads...particularly on my 33rd treatment might have taken me into the blue zone. That's exactly when the crying jags got worse! Because my rads dragged on , I actually had 3 Herceptin infusions during my rads.
I think many of you agree that what makes it harder is that after 8 months of treatments..our friends and family want to change the subject and think we should be just getting on with our lives just as we are the most beaten down, tired and depressed!
I cannot thank you enough for being there and reminding me I am not alone in these feelings. I am in the process of changing my MO( finally did it shore 1) because I have virtually no relationship with him . You ladies and my wonderful BS have been my source of strength through all of this.
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Wow, lots of good posts here. I have been lucky and not needed the antidepressants. I too am in the camp of less drugs is better but if you need them you must take them… many people really do need those antidepressants. Seems mental pain can be much worse than physical pain in many cases. What kayb is saying makes sense. I know I'm healthy mentally, and feel lucky about that. Remember many of us have said that unless you've been through breast cancer you really don't know what it's like… I feel the same is true for depression and other diseases.
I know how I cried like I never cried before between diagnosis and surgery. It wasn't often but if I felt like that all the time I would have needed drugs. It would have been so painful to feel like that all the time.
Ashla you only have 12 years on me and 1 year younger than my husband. (Notice I didn't say older). Close enough.
BTW I have volunteered at the ACS. I'm on one of the Strides Against Breast Cancer committees (event in Chicago in, of course, October). The steering committee I joined is focusing survivors and caregivers. (At that meeting I was the only breast cancer survivor and I don't think there were any breast caregivers. Everyone was young except me. I mean in their 20's.) ACS's main objective is education. If anyone has any ideas of what you or your support system (caregivers) would like to see at an even let me know. I'm sure anything that is successful in Chicago will be shared will be shared nationally. I had some good input as a survivor but as we know we are all so different. Feel free to PM me.
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Kay,
First and foremost, please accept my apology for offending you. It was not my intent to offend anyone.
Anti-depressants were thrown at me for several years..I took them for a couple weeks, researched them, flushed them. Turns out the entire time, I wasn't depressed, I had a thyroid problem no one bothered to check. But I suffered for several years with it...all the while dodging the anti-depressants thrown my way.
The same held true for several other people in my family. It seems when the women in my family go in for symptoms of hypothyroid, the FIRST line of action is anti-depressants. When the men go...blood test. Go figure.
This is MY experience, and that of those around me. I've never been diagnosed "clinically depressed" so really can't speak with any knowledge on it.
As for taking a pill to help get through something like BC. We'll have to agree to disagree to a point. I agree we're all different, we all have different coping skills and life circumstances. My BC journey is not yours. So you are right that some women may not have the ability to cope without help for a time. In MY experience though, they often aren't given the skills/tools to cope (after all this is a lifelong thing), just thrown a pill. I also stand by the assertion that a person should rule out any underlying medical issues first before going on pills that have a whole host of SEs... no matter WHAT the pill.
Hope that clears up any misunderstanding.
T
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Ton, I also took anti-depressants for about a half a year. My doc asked how I was doing during my well-woman exam; I told him I'd been blue for a couple of months. He asked no more questions i.e. what's going on, anything physical to go with it, how's work, etc. Just broke out the rx pad and wrote the script. The first month it helped, then I felt like, I don't know, not me anymore. I quit taking them. I don't see my self using them again in the foreseeable future. It's been a rough 18 month; my very beloved mom passed away last Memorial Day, my son was in a car accident (nothing serious, thank goodness), I was in a car accident, we moved, became empty-nesters, I changed locations with my job twice, the got hit with BC. And it sucks. When I had my first appointment with my BS, we spoke about my life and I gave her a brief overview of the last year. Her first response? Break out the rx pad and write me a script for anti-depressants! I told her thanks but no thanks.
My husband has been on them since about a year out from become insulin-dependant. He DOES need them. I can tell when he has missed a couple of doses.
Okay, I'll stop now. Next topic: breakfast.....and...go
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Okay, different topic:
one of the meds my MO prescribed is compazine. I have only taken two since the surgery. So, today (better late than never, right), I looked it up online and one of the cautions is if you have had or have breast cancer. So, is it a dosage thing or what? Any takers?
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Vicki.....this in drugs. Com
Phenothiazines (Includes Compazine) ↔ Breast Cancer
Moderate Potential Hazard, Moderate plausibility
Applies to: Breast Cancer
The chronic use of phenothiazines is associated with persistent elevations in prolactin levels. Based on in vitro data, approximately one-third of human breast cancers are thought to be prolactin-dependent. The clinical significance of this observation is unknown. Chronic administration of neuroleptic drugs has been associated with mammary tumorigenesis in rodent studies but not in human clinical or epidemiologic studies. Therapy with phenothiazines should be administered cautiously in patients with existing or suspected malignancy of the breast.0 -
chacha, thank you! I think the bottle will sit in my drawer. If I have nausea issues and pepto doesn't work, I'll go for the zofran. Thanks again!
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on the subject of anti-depressants, i have to tell you Ativan was my best friend when i was waiting for final pathology results after chemo ended. On top of that I was taking sleeping pills. I never took anything before BC - I didn't even like to take tylenol often. My MO actually precribed anti-depressants during chemo because more than once I had a crying fit in her office. We first started with me seeing a phyc at the cancer clinic, that was a complete waste of time. I didn't feel any better so she recommended the meds. I hesitated to take them only b/c i was concerned that some drugs interact w chemo/tamox. In retrospect, I should have taken them. I had some really really dark months during this process. I just couldn't deal, and no amount of talking/analyzing/positive thinking could get me out of my dark place. So, yes, my brain works differently than some and the meds may have given me something to help me get out of bed everyday. Whatever gets you through is my motto these days
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So right Rozem....I was fortunate enough to be able to work through it all with just a 1/2 xanax occasionally and now occasionally but this is a tough thing to go through and if it isn't physical, which I don't think it is the majority of the time, take something to help you get past the dark times. I ALSO am not a pill taker, always hesitated taking even tylenol and taking something is hard on me...but I do it when I need it.
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Hi everyone! Hugs!
Dang... I dunno that Herceptin tx cost a fortune here. I better ask my insurance if they can cover it . If not..I have no choice but to forego it
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Good afternoon ladies. I just wanted to come in and sending positive thoughts and healing hugs to all of my triple positive sisters.
I have read through quite a few pages of this forum and it is interesting to see the different treatment approaches and responses by everyone.It seems the majority had sugery first. Almost immediately after diagnosis. I chose to have my TCH x6 first. It also seems that some haven't met with ROs yet. My experience was a bit different. Diagnosed on a wednesday, saw BS on Friday discussed surgery. Met with RO in AM on Monday and MO in afternoon on Monday. Elected to have PETScan/CT, MRI, Bone Scan, and echo prior to making my decision. Positive biopsy of lymph nodes also gotten after initial breast tumor biopsy was done. Scans showed multiple enlarged, irregular right axilla nodes and supraclavical node enlargement. The chemo shrank my tumors so much so that they were not able to identify them on scans prior to surgery.
After chemo I had surgery 1mo later. Final pathology(after chemo) showed no evidence of IDC but 3 areas of DCIS high grade solid pattern cells in breast tumor. 2 of the 4 nodes removed also showed metastatic malignancy. Lymph vessels positive for aggregates of single cell malignancies as well and the other 2 nodes showed architechural changes. They did not remove any supraclavicle nodes. I also had an area of calcification biopsied during surgery. It came back microcalcifications. And I have the same looking areas in the benign breast. Not yet biopsied.
I have done 30 of my 36 Rads. To breast, clavicle, and axilla. I have a CT scheduled for the 2nd of July recheck a 5mm nodule found in my Lower Left Lung (on accident) just before I started chemo. It had resolved after chemo but 3 new ares were found in Right lung on the last follow up scan. And my GP and MO are concerned with diminished breath sounds on left side x1mo now. I also had areas of uptake on PETScan in my spine and on Bone Scan. Hoping that was just natural uptake but I will have to get that redone after all of this as well.
I have had a great team of DRs. The only complaint I have is that they didn't inform me of the other areas of concern and the seriousness of my diagnosis. I found out from reading my reports and questioning about my lung, supraclavicle, and spine. Now they tell me everything and are up front about the possibility of metastasis past my lymph nodes.I am ok with that, I just need to know what I am up against. I think sometimes being a nurse can be worse then not knowing so much....lol
In addition, my BRCA tests were negative and NO Family Hx of Breast Cancer. I did have high grade squamous cells (determined precancerous) cervical in 2000. Had Leep performed. Came back in 2004 but had gone endocervical and into my uterus so had Vaginal hysterectomy in 2004. Ovaries still intact.
My ER+ 94%
PR+ 44%
HER2 3+ and FISH confirmation test for HER2 + @ 4.2 ratio (HER2/CEP17)
Much Love and Healing Hugs,
I will keep ya posted on any new developments,
Denielle
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Denielle, welcome. Wow, you have been through the wringer and you're not done yet!? Hoping that all that activity on your lungs will prove to be nothing and related to your chemo. Love that bald, btw!
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Thank you so much Vicki! I actually was so worried about going bald I even got a wig prior to losing my hair. It started to thin and fall out day 14 after my 1st treatment. I decided to take control of the situation and not just let this disease take my hair. My daughter said she would shave my head for me. We made a GREAT time of it. Wonderful memory of laughs NOT tears and some great pics. I embraced my baldness and actually got quite a few compliments and more then a few date offers...lol I think I was a beautiful bald woman. My hair is coming in. Started growing after TCH regimine was over. Spiked on top now and growing fast!! I still haven't worn that wig yet....$250.00 spent but it won't be wasted. I am donating it to a young breast cancer patient through the cancer center I go to.
Yes I have been through a lot in the past 7 1/2 mo but it has been a learning, growing, experience that I see as a blessing. I started blogging from the moment I got the call. My blogs have reached hundreds if not thousands. I smile everyday when I read the emails and comments from people my blogs have helped. Whether they educated, inspired, or just comforted someone, I am overjoyed that I have positively impacted someone's life. I also had an opportunity to do a radio show in March just before my surgery. The topic was dealing with cancer and fighting it with a positive attitude. I have always had that. Even in my darkest moments.
Here is a link to my blog if anyone would like to read. It is on WattPad. This link is my profile. The name of the project/book/blog/journal is "A Curse or a Blessing? My journey through Breast Cancer". I have been slacking a bit with posting new chapters (blogs) But this carries you through to my last TCH treatment. I guess I better update it...lol. I have my blog on so many different sites I sometimes forget to update all. Here is the link:
http://www.wattpad.com/user/DenielleFreeman
I also have a group on FB called Denielle's Story for cancer patients and family and friends to come and share and support each other link: https://www.facebook.com/groups/215080125264060/
Have a blessed evening...Healing Hugs!!!
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Welcome new ladies. I know this isn't the cold cap blog and it won't help those who have already started treatments and lost their hair, but PLEASE pass the word about the cold caps....you don't have to lose your hair. Some ladies don't want to deal with the caps or the expense but to me they were so worth it. Good luck girls. Pass the word to anyone you know just starting out!
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Vicki....I think zofran is great. I didnt have much nausea, more queasiness, but the zofran worked well.
Ashla, and everyone else....At diagnosis, I had panic disorder. Was put on Cymbalta to help with it (huge difference) and to potentially help with joint pain from taxol. It is why they picked Cymbalta. I had very little joint pain. Cant take it with tamoxifer though, so weaned off, and was over the disorder.
Hot flashes are terrible, so I am taking effexor, which helps. I dont care if it is an anti-anxiety. If it helps me not be dripping with sweat every hour or so, I will just about take whatever they offer.
Calling the insurance company tomorrow to see if they will cover a petscan or full body cat if my onc orders it. i believe if they say yes, I have worn him down.0 -
Thank You Lago for the link. I will discuss receiving Herceptin during Chemo with my chemo doctor tomorrow. So far, from the other medical staff that I have discussed this with, it seems to be protocal in BC to receive Herceptin after Chemo. But as the study states, the difference was statistically significant for chances of recurrence taking Herceptin with Chemo. If find this all very over-whelming and quite frankly, very difficult to know how to make the right decision at times for my care. Thanks again, Deleenia
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wasqij remember that not everyone who is HER2+ will get mets without herceptin. There are women on these boards that were HER2+ but herceptin wasn't available to them. Hey for all I know I was over treated and didn't need Herceptin… maybe even chemo. There was a 40% that I would only need surgery. (Granted 58% chance of dying in the next 10 years without further treatment wasn't good odds so I did the chemo, Herceptin and the ESD).
Hopefully you can get your staff to change their plan.
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hi deleenia,
I hope you read this...I am in Ontario and I have sent you a private message explaining the protocols that are given at my hospital here and others i have consulted with
I am not sure why they are not starting your herceptin with chemo, it is standard of care at Sunnybrooke and Princess Margaret, they are the top 2 cancer centers here in Ontario.
from my research BC is the same as Ontario in that Herceptin is approved for all early stage BC, I think some provinces have a cut-off of any tumors over 5mm gets H but your profile says 3cm so that is not the issue
feel free to PM if you have any other questions
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Hi all - haven't posted the last few days but have been reading/keeping up. Just having a rough few days of "what ifs" and apprehension. Speaking to the meds conversation, I have always struggled a bit with OCD tendencies - more the obsession/worry/intrusive thoughts than compulsions. Always managed to keep it at bay and "get over it" but the cancer dx brought it all to the forefront again. Discussed with my MO and she had many suggestion as others here did - go ahead and feel the pain, don't try to suppress your feelings, don't just "pop a pill" to try and feel better. In spite of all that, I know how my mind works (or doesn't
) and how I process things and so she went ahead and gave me a prescription for Celexa...I have been on it for about 6 weeks now and cannot tell you if things are necessarily better or not - since I just spent 3-4 days in a serious funk, maybe not. I was taking xanax as needed before but I wanted something to try and keep me on a more even keel. Anyway, just wanted to check in - hope you are well...feeling better today. Even got on the treadmill for 30 minutes...
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Hello kltb04.
I think it is great that you assessed YOUR situation and thought about it before just jumping for a med or refusing one. There is nothing wrong with needing a little help once in awhile. This is a VERY scary, complex, uncertain, vulnerable, etc time in our lives. You understanding your personality and your tendency to over worry and obsess on things until your thoughts turn to a darker or unproductive place is AWESOME!! We need all the positive and good things we can get right now and a health mind is a BIG one!
As far as still getting into a funk and having these thoughts. They are normal but when they start to interfer with daily things and seem to YOU to extend beyond the normal time frame, (we all, cancer or not, have bad days but perk back up in a reasonable time), that is when I would say to "MYSELF", these meds may not be working. 6wks is a good amount of time to get a good level of most medications into your blood stream. I would suggest calling your DR and seeing if an increase in dosage may help? A lot start on a low dose but many need to increase to dose double, sometimes triple the original dosage, just depends on the medication. I would try this before trying a new medication since you already have this one in your system and I am guessing no SEs? Which is a plus! Now if you have done this or after doing this and still no changes or you are not SATISFIED with the level of change, you can always ask if there is something else you can try. It isn't uncommon to have to try more then one before you get the one right for you. I know, I have had to be on anti-depressants/anti-anxiety meds a few times. Xanax is great for those breakthrough anxiety episodes. It is fast acting but not long lasting.
Sending you comforting hugs and wrapping you in a calming embrace full of healing light. Have a blessed evening. I just noticed our DX are almost the same. Healing Hugs!
Denielle
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Hi Ladies,
Dang it's hard to keep up with all of you. Welcome to the newer ones who I haven't met yet. I purposely stayed away for awhile. I had a major metastasis scare and I didnt want to scare those of us who have been through this all together. I look back now and yes, I know that was silly but that was my thinking at the time.
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