TRIPLE POSITIVE GROUP

deni1661

kae 99 - interesting that you have tailbone pain too.

Hapb - I'll have to check out the Herceptin/tailbone pain connection you mentioned. I've been on Herceptin since Sept so it seems odd that my tailbone pain started only a few months ago. I really thought it was the Arimidix since I had all over body pain but since switching to Letrazole the only pain remaining is in my tailbone. I recently got a "tush cush" but so far there is no relief. It's very painful to sit and even worse when I try to stand back up again.

kae_md99

deni and HapB,

i have pain all over my body (bones inluding tailbone and muscle).. i am 1 month PFC and i am on lupron and just started herceptin only. so i don't really know what is causing it....

moodyblues

Kmac68.  I am posting this for you and pm'ing you as well in case you don't see this post. 

ALL liquids, especially water made me nauseous, in fact so bad that even thinking about drinking made me feel sick.  I took more anti-nausea-meds because of this.  It was horrible.  I then developed constipation and you know, it was a vicious cycle.  My daughter bought several things for me this weekend which changed the direction of this. 

TAZO iced passion, it is a herbal tea.  caffeine free and can be cold or hot.  You mix equal parts water and Tazo.  I added 1/2 tsp honey.

TAZO iced sangria black tea.  Very low caffeine, can be cold or hot.  Mix equal parts water and Tazo.  I added 1/2 tsp honey.

TAZO wild sweet orange tea.  Caffeine free.  My stomach handled this well.  It is for hot tea and I added 1 tsp of honey. 

(I tried the TAZO mint but, my stomach hurt afterwards)

I am now drinking!  Thank God!

(cross posted)

deni1661

kae - I had terrible body aches when I was on Arimidix. Legs, back, neck, shoulders, ankles....I could barely move and sleeping was impossible. the Letrazole seems to have reduced the majority of body aches as all that remains is the tailbone pain. It's hard to tell what our pain could be from....Hapb only gets Herceptin so maybe that's it since we're all getting Herceptin

ElaineTherese

HapB,

I'm sorry to hear you're in such pain! UGH. Have you told your oncologist? What did he/she say? Have you thought about having a bone scan or PET scan, just to be sure it's not mets? (Not to freak you out, but if I had that kind of bone pain, I'd think about it.) Hope the pain subsides soon!

SpecialK

hap - just wanted to add that I am unaware of any type of infection actually caused by Herceptin - and I have been on BCO a long time,rather I would think an infection would occur due to reduced WBC from Taxol, that took some time to set up. Opportunistic infections during chemo are common, and your port situation, and it's removal, may be the source.

Anonymous

Well I did it .. went and had pretty much all my hair cut off.. its about 1 1/2 all over.. it wasn't as bad as I thought it would be..
Cried a little... but I'm ok... head is cold tho lol

FYI .. Great Clips (if you have one in your town) will cut your hair for free for as long as you are in cancer treatment.. I thought that was pretty nice of them..

Hugs from TN
Denise

kae_md99

deni,

i am not yet on arimidex. had herceptin only infusion june 23, on my second month of lupron shot and finished chemo june 2. now i have bone pains all over especially joints. all over. like i am 100 years old.if i stand up from a sitting position, it takes me a while. its hard to climb the stairs. this started about more or less after my herceptin only infusion. but i have been getting hercptin with the TChP regimen though. its either the cumulative effects of chemo,herceptin alone or lupron. will discuss this with my MO. its hard to go through surgery with this pain. and i se my MO 2 weeks after surgery.

SpecialK

Denise - often the anticipation is worse than the event, it was for me. Once my hair was gone I figured I was on the way to it growing back.

kae - I would be almost as inclined to think your joint pain is coming from the estrogen suppression

kae_md99

SpecialK, i think so too. now i am thinking of getting my ovaries out instead of lupron. i am 45 years old.i cannot live like this. how can i go back to work if i am like this? i am a nurse on a very busy cardiac floor.is there something else beaide the lupron? im almost tempted not to inject myself with lupron when it is due which is july 17, 3 days after my bmx! my husband said just refuse it but i know it will help prevent recurrence. and im not even on arimidex yet!

ElaineTherese

kae,

I'm on Zoladex, which is another ovulation suppressor. I don't know if it will affect you in the same way as Lupron, but for me, it hasn't caused any pain. Zoladex is monthly whereas Lupron is every three months. So, it's not terribly convenient.

I have considered having my ovaries removed, too. My old OB/GYN didn't like removing healthy ovaries because women who keep them tend to live longer. However, he has retired, and I haven't had the chance to talk to my new OB/GYN about it. She's on a leave of absence because her husband recently died (of cancer of course), and she has three young children.

Hope your BMX goes well!

Anonymous

I'm Herceptin too and will be until next year.. so the whole tail bone pain is concerning me..
So I did some looking around...
Herceptin sx is joint pain right? The tail bone moves not as much as a joint..but it still have joint like qualities I think they call it amphiarthrodial joint ...maybe that's why it hurts?

Just a thought...

Anonymous

HapB , I thought one of your problems was your tail bone hurting
Since one of the sx is joint pain.. maybe since MD lump the tail bone in being a joint .. that might be why your having tail bone pain ..
I'm not sure why any joint pain is a sx .... but I do know come Friday they are are NOT going run my Herceptin at 30 min. ... its going to be a slow go... or you will see fireworks coming from Nashville! lol

Anonymous

yeah.. I've been trying to find that too... grrr..
will post if I find anything !

kae_md99

elaine, i will talk to my onco about zoladex. maybe it will be better for me. its ok even if it is monthly. thank you

deni1661

Kae99 - your symptoms are just like mine were on Arimidix. I don't have any pain other than my tailbone on Letrazole. I have trouble getting up after sitting but once I start walking it loosens up a bit. I'm sorry you're having so much pain going into your surgery; maybe your MO can give you something? Pain is a stressor and you want to be as relaxed and stress free leading up to your surgery!


I hope you find relief soon, take care

kae_md99

thanks Deni, i am just taking Tylenol for now.. i know my PS/BS will give me narcotics after the surgery.

coachvicky

For those of your suffering on Arimidex ...The first generic manufacturer I tried was horrid. I had so many hot flashes I cranked the AC up and held my head over the vents multiple times a day. A triple electric bill later, I called my pharmacy and switched to the TEVA brand. I may be able to tolerate this but I am continuing to swell about 3 pounds overnight. It is the "fillers" in the generic brands that seem to cause the side effects.

I learned this from another forum on this site which I will post at the bottom. Posting at the bottom avoids funky text!

Depending on how this TEVA brand goes, my next alternative is Arimidex Direct. It is a dollar a day should my insurance not allow an override. Here is the site: https://www.arimidex.com/arimidex-direct-enrollmen... (You may need to paste the link into your browser.)

Vicky

Here is the forum:

Topic: For Arimidex (Anastrozole) users, new, past, and ongoing

Blownaway

HapB - How strongly ER+ are you. It's something to consider. I was 90% and I would feel so much more secure had I been able to do Herceptin.

Blownaway

Hap - I guess I just feel more is better. No worries.

Blownaway

HapB - only 7 or 8 infusions of Herceptin before heart failure set in. I am taking Tamoxifen and plan to stick with it. Since I never finished targeted therapy for HER 2, I'm just nervous about the strongly positive ER. Didn't mean to be vague...

Anonymous

Hapb do you have the link with the 50 percent on BC.org about heart failure?

All I've found on this site says 5 to 30 percent.

ElaineTherese

Fifty-one subjects in that study -- pretty small-N by statistical standards. But, yes, there are women like Blownaway on these boards who have had to stop Herceptin because of heart damage.

Anonymous

Thank you! I had echo. done before I started chemo and will have one every 3 months.

The article was done in 2011 .. l wonder if there's been any updates on the Hercpetin formula since then?

It happens for sure ...it may happen to me who knows? I fall right in the middle if those that were tested. I'm 55,been on HBP meds since my 30's. And pre diabetic..but Ifeel like I'm being monitored pretty closely . Just have to take one problem at a time.

It's there another medicine like Hercpetin? Seem like my MO talked about a medicine that worked liked Hercpetin,but instead of the medicine sitting on the outside of the cells to block the HERs2 it actually goes inside the cell after the HERs2.

SpecialK

In most cases the cardiac effect is a reduced LVEF - left ventricular ejection fraction, which recovers when Herceptin is done. I had an initial echo, and repeat echoes done at 3, 6, 9, and 12 months. Yes, my LVEF dropped - but not 10% or 10 points or below 50% - which is the benchmark for stopping Herceptin. My LVEF returned to normal after Herceptin was done. This is a known side effect of Herceptin, and is different from permanent damage done, or congestive heart failure. Not to say that more permanent issues, or CHF never happens, but it is not the norm. This was a small study done 6 years ago, and included patients with cardiac issues in place prior to diagnosis.

denise - they can't change the formulation of a drug without putting it through trials again, not likely to happen considering the great success of Herceptin. Prior to its use for early stage BC many more Her2+ women did not survive. If you are curious about how Herceptin came to the market watch the movie "Living Proof" about Dr. Dennis Slamon at UCLA.

hap - the noted side effects are listed from the data collected in the FDA trial process. Your MO can report an adverse event but occasional pain is considered an acceptable, and usually short term, side effect. Also, because most people are ingesting and infusing many drugs during chemo it is impossible to determine what is causing which thing.

Anonymous

Hapb if this was a different kind of bc I might be inclined to agree with you but it's not.

I would contact your MO and ask why the heart issue wasn't discussed with you. My MO talked to me about it at my first appointment.

Hapb for all the the knowledge and medicine and treatments out there the MD's don't know. This is something I've had to come to terms with myself . I want absolute answers about my cancer . But there are none. Best that we can do is educate our selves and make the best choice we can . There are no guarantees nor absolutes even in medicine s. They have a good idea how the therapy works and should work but sometimes it doesn't or it works better than they thought. ..But in the end there's only choices and hope for us to make.

For me it's worth the chance .. if I was 25 or 75 it would be worth to take the medicine. Not because Im scared of dying,after 9 surgeries and the depression that doesn't scare me. But I'm worth fighting for. My husband and kids and friends are worth fighting for. But THAT'S me.

Hapb you have to make the choice s for you.If you don't want to take the medicine then don't ..that doesn't mean you are giving up it just means you are making the best choice for yourself. You do what you feel is best ... nobody can take that away from you.

Hugs from TN

Denise

wabals

HapB I am 73 and had no problem with herceptin. They do echos every 3 mos to watch your heart. My bp did go up so I got a med for that

wabals

HapB I meant bp blood pressure. I finished treatment a year ago and my heart is fine

coachvicky

Oh HapB ... a cancer journey is a leap of faith ... trusting strangers at a time you are in shock ... making decisions quickly that will last a lifetime.

Be informed, study, research, and question but in the end it is like my husband said to me, "Vicky, Dr.M (my MO) is doing everything he knows to save your life."

So, on 22 August 2016, I started chemo. I finish 14 August 2017. I have exercised my fat a** off and increased my MUGA score each time.

Best wishes.

Vicky

Anonymous

HapB
Did ask about your ten year survival rate?

Hugs ...
Denise