Her2 gals, Anxiety, and needing support with Questions.

mmm5

Starting this thread to help support newcomers and share fears in being dxed Her2 positive. It is an offshoot of the thread "10 year success stories" where we wanted to get back to the original topic so we could go back there and read just uplifting stories when needed.

Feel free to use this tread to share your anxieties, questions, and stories you have with being Her2 positive. 

Beach

mmm5.....Thanks for creating this thread.   

I'll introduce myself.....my name is Sandy and I was dx with Her2 +++, ER+, PR+ bc in Feb 09 at age 45.  I read everything I could find about this type of bc and treatment in order to try to gain some control over what was happening.  I'll admit, eventhough we are lucky enough to have Herceptin, the whole Her2 thing continues to be a worry in the back of my mind.  I was pushed into chemopause quite abruptly, (and still am), and then the sleepless nights set in.  I dealt with a pretty bad reaction to Taxotere which has left me with physical and psychological se's to date.  It was tough but I plugged along and thought I was getting through okay.  It was January of this year when the fatigue of tx and still not being able to stay alseep at night really started to take it's toll on me.  During this time the anxiety consumed me and pushed me into a serious depression.  I didn't know what was happening to me; had no frame of reference to recognize or deal with this, and consequently tried to keep it inside because of the shame and guilt I was feeling.  Afterall, other than Herceptin, active tx was done, so I should be feeling better....right?? 

Wrong....luckily for me, my GP and oncology team saw it in my eyes and rounded up the troups very quickly to try to help me.  I found out that I'm not crazy, nor was I alone in this dark place.  These feelings are common and there are people (and meds) available to help us get through and regain control of our life.  I'm still in the midst of this battle but I do see the light.....finally!  I just wanted to share my experience in order to let others know that they are not alone and it's okay to ask for help.  I read something recently......"Depression is NOT a sign of weakness, rather a sign that you have been trying to be strong for too long". 

Best to all my Her2 sisters out there and thanks for listening!!

((( ))) Sandy 

stlcardsfan

I think this is a great idea as well.

I was diagnosed in Dec 2009. Did the chemo route first due to HER2 status and size of tumor mass. Goal was to get that sucker to stop growing and possibly get it to shrink so that lumpectomy would be an option. Due to my young age at dx (42) and no family history of BC, genetic testing was recommended. I did it and low and behold found out I was BRCA 2+. No one else in my family will be tested, they don't want to know.

So, with that new information, lumpectomy was no longer a realistic option. Mind shifted to bmx. Also was given information on prophylactic bilateral salpingo oopherectomy (BSO). I have no children, and at that point realized I was never going to have any. I just couldn't pass on the gene once I knew. After discussing with DH, and weighing all the facts, decided that bmx and bso were the way to go. Figured I got BC so early, why risk it with the ovarian cancer. Lucklily was able to coordinate all three surgeries on the same day. TCH had done it's thing, no sign of cancer mass in path report - total Chemo response per dr's. Right prophylactic side clean as well. BSO produced clean results as well.

All good news but I still worry. Here I sit, no breasts, 1/4 inch long hair at best, no ovaries and no tubes. Tissue expanders that hurt and haven't even started the fills yet. Still getting herceptin every 3 weeks until Jan 2011. Knees and joints that ache every morning from the herceptin. And hoping that what I am doing will be enough and that it will never come back. I very often have periods of why me, why did I get this? HER 2+, and the BRCA gene. Come on, why the double whammy??? Tears fall for no reason. I am always "chipper" at my appts as my dr calls it. But secretly I am scared. I still have the cushion of Herceptin for 5 1/2 more months so I should be happy and not worried. But I am. 

I was given a prescription for Effexor to help with the surgical menopause hot flashes, but still have not taken it. I know it can help, but worry about what else it might cause. And given that I still have at least 2 to 3 more surgeries to do, worry about the withdrawal when it has to be stopped before each surgery.

I guess I am a worrier, but it is part of my nature. Thanks for listening. 

blondie45

stlcardsfan - I can relate to your anxiety. I do take Effexor and I believe that taken with about 5 hours of moderate treadmill walking each week (I found if I skip 2 days in a row that the hot flashes come back) I had conquered the hot flashes for now and feel so much better overall. I am not sure where I would be at right now without the Effexor and exercising, probably hiding in my bed because I had such terrible hot flashes that almost left me unable to function. I am sorry about the pain with the tissue expanders. I haven't done reconstruction yet but I had radiation so I don't think I want implants.

Beach

stlcardsfan - I recently have been switched from another med to Effexor due to some serious se's that were affecting my quality of life.  For me, Effexor is definitely helping me battle depression and anxiety, with very few se's as compared to the previous med.  It also seems to be helping with the night sweats, so I'm getting a better quality of sleep, finally, which makes all the difference when dealing with this stuff.  I agree with blondie45, Effexor is helping me, as is a little bit of exercise.....I know where I would be without Effexor, and I never want to return there again. 

Best to both of you and big hugs...

((( ))) Sandy    

stlcardsfan

How long until you noticed that Effexor was helping with the hot flashes?

I got the lowest dosage, and it is Extended release version.

Thanks 

Beach

For me I noticed the decrease in night sweats about two weeks after I had been on the full dosage that my psyc prescribed.  I switched to Effexor only in mid June, so it's still early days - he started me at the lowest and increased me in two day increments until I got to my therapeutic dosage.  All were/are extended release.  Initially it was difficult, but all this stuff takes time.  I'm still getting hot flashes and major sweats during the day, but at this point, I'll take that over not being able to sleep. 

blondie45

For me I think it took probably 1 or 2 months on the Effexor before I noticed a difference in the hot flashes, then again, I also started exercising then and noticing that if I didn't they came back so still believe in the combination.

BonoboGirrl

I'm just curious, with some of you having finished Herceptin a year or so ago, have you noticed any lingering, or have you developed any new, side effects?

I've been having a tickle in my upper airway, and lungs just haven't felt right in general. This symptom would worsen after every Herceptin treatement. It began, first, in response to TCH, as part of flu-like syndrome. Went away briefly and then as H treatments progressed returned and eventually stayed. It's not as bad as it was; there is improvement, but it's unnerving. Scans are clear. Have decided I would see a pulmonologist in the summer if things aren't right by then. Figured I should give my body a chance to recover. My main concern, I guess, is the possibility of lung toxicity, especially fibrosis, from the treatment. Anyhoo, just curious if any of you have experienced unexlplainable SEs, or, again, have developed any since completing treatment.

Beach

Hi AnneMarie,

Haven't been here for awhile but saw your post and wanted to let you know that you're not alone with these unexplainable SE's; however, I'm not sure which tx is the culprit.  My chemo tx was 3 x FEC followed by 3 x Taxotere plus Herceptin.  "E", epirubicin, can be very hard on the heart with irreversible SE's.  Taxotere had to be stopped after my 2nd tx due to a severe toxic skin reaction.  Raditiation was finished end Aug 2009, and Herceptin finished back in May 2010.  I felt fairly good physically until end August, (mentally a completely different story though).  Around this time I started feeling as though I was fighting something but no colds or flu ever materialized; just had, and still have, this overall feeling of being un-well.  Although the intensity of my SE's go up and down daily, they are still present today; some of which are fatigue, mental fog, congestion in nasal passages, post-nasal drip, increased phlegm in my throat, sore throat, trouble swallowing, and more recently, strange and random skin rashes and pain, trouble breathing and/or breathlessness with very little exertion, plus increased muscle weakness and stiffness.  Many tests and scans have been done, and specialists seen, but yet, nothing definitive figured out.  Very recently I had a CT scan of the thorax which showed some pericardial fluid around my heart and pulmonary fibrosis in the upper right lobe, (a direct result of radiation therapy).  Nobody seems worried about this but me, however, I have not seen my pulmonary specialist yet to discuss these results, so on it goes.... 

I know some dr's, and people in general, are convinced that I'm either crazy, a hypochondriac or both....heck, so do I at times too.  This part of the journey can be VERY frustrating and exhausting but at the end of the day, we know our bodies' the best, so my advice to you is to keep following your intuition.  Take care of yourself my friend.  Big but gentle hugs to you!

((( ))) Sandy 

BonoboGirrl

I'm sorry to hear of the fibrosis. That just sucks, Sandy. How frustrating. I've read, with regards to lung fibrosis, that some days you will feel well and others terrible, and that symptoms include fatigue. I'm curious why fluid around the heart isn't considered significant. Wouldn't they treat that with something?

What's interesting is that my onc never gave my my ejection fraction scores after it dipped down to 51% over nine months ago. The last two echocardiograms he just said "it's improving; we can continue the herceptin." I think before I see my pulmonologist I'll request the scores from the diognostic center that conducted my echocardiograms. Argh. It's so frustrating. I don't want to feel like this indefinitely--hope that it will eventually get better, like the neuropathy I used to have from taxotere did.

Let me know what the pulmonary specialst thinks.

hugs!

BonoboGirrl

Sandy, you wrote: "and more recently, strange and random skin rashes and pain"  

Could this possibly be related to shingles?

Beach

AnneMarie,

I still have peripheral neuropathy in my hands and feet; I only got 2 Taxoteres...tough drug!  At this point, my neurologist admits that it may never go away.

Initially shingles was a possibility until a later rash developed on my upper back and neck which crossed the midline.  As a rule, shingles doesn't cross the midline.  Also, the rash never turned into open blisters like I have seen in pictures; mine actually looked more like "prickly heat".  The other type of rash that I get more often is itchy, red, warm large blotches that swell up and come up randomly on my body.  Last week it was my left foot and ankle; this morning it was on my right thigh; prior to this, it's been on my arms, trunk, etc., but never two different locations at one time.  I've been told it looks like hives but no one can tell me what I'm allergic to and/or if it's a symptom of something else. 

As far as the fluid around the heart goes, it's considered a trace amount and this is the first time I had an echo and CT scan of this area so they have nothing to compare these results to.  Line of thinking currently, (my pulmonologist included as of today), is to watch me for other symptoms...

Did you have any MUGA scans done on your heart during Herceptin?  I was given a MUGA scan every 3mths to check my ejection fraction, but never an echocardiogram.  I agree with you about getting more info....knowledge is power.  It is frustrating though, and I think the thing that bothers me the most is that most specialists are working so independently of each other...no one seems to be willing to look outside of their own little box and try to connect the dots.  I told my psyc recently that I need Dr. House .  At this point I feel as though each doctor is thinking "poor her, it's all in her head", and then sending me back to him and my GP.

Be good to yourself and best of luck with this.  Let me know what happens.

Hugs back