TRIPLE POSITIVE GROUP

Musogirl, I have the same thing happen with Herceptin only... my neuropathy worsens in my hands and feet after a few days

Alana

Hi to everyone,

Me and a group of friends are trying to help a common friend find information on treatments that can help her. She has triple positive breast cancer with solitary brain metastases. I have a few questions and maybe someone can be of help to us:
1) Does someone here have the same diagnose and tried taking Metformin in addition to his regular treatment? Any personal story for Metformin will be very appreciated.
2) Did anybody with the same diagnose ever try the Cellect-Budwig Protocol and say if it helped him at all?

3) Do you know where i should look for more types of treatments for someone with this type of cancer.

any information about a special treatment of any kind will help my friend very much, we are all really trying to do our best and provide her with as much information as possible.

Durham girl- Yes ME TOO! I finished 5 of my 6 cycles of TCH before the neuropathy got bad enough for them to say 'stop'. BUT, when i started the Herceptin, which I had dubbed the "easy chem" stuff got bad. Severe body pain, my shoulders hurt so badly I have trouble getting dressed. I'm only 50, and an avid cyclist. I cycled and lifted weights everyday of the 'bad ' chemo, and I never even took meds when I had surgery and radiation. Now I wake up everytime I move at night. It is hell! And my onc claims this couldn't be from the herceptin. Are you kidding me? For the record, I'm a physician, so I'm pretty annoyed she has the nerve to say this to me. Clearly this happens to some people. Anyway, I'm a few cycles along, and it's a little better. I have found that if I avoid strenuous activity, it actually helps the pain, but sitting on the couch is the worst thing for it. ( if that makes any sense).

Vaginal estrogen is safe for breast cancer survivors suffering from such urogenital symptoms as vaginal atrophy, vasomotor symptoms, and lower urinary tract infections, and there is no evidence of increased risk of cancer recurrence with the treatment, according to a statement from the American College of Obstetricians and Gynecologists (ACOG).

However, the decision to use vaginal estrogen should be made in consultation with a woman's oncologist, and only if "first-line choices" for managing urogenital symptoms -- which should be nonhormonal products such as lubricants -- are ineffective for breast cancer patients, reported ACOG's Committee on Gynecologic Practice, writing in Obstetrics and Gynecology.

http://www.medpagetoday.com/OBGYN/Menopause/56345?...

This whole thread on muscle pain/Herceptin is fascinating to me.

I honestly thought it was the rads that knocked me on my butt this past weekend, but now I wonder if Herceptin didn't creep up on me. I had my infusion Thursday, after going to an exercise class. . . Went to yoga on Friday, and could barely walk all weekend; actually, the hardest thing was sitting on the toilet (of all the things in the world). Sunday I went to yoga again, and by Monday my legs were on the mend, but my shoulders and neck were sore. I finally broke down and took Tylenol yesterday afternoon, but I don't want to become dependent on OTC anti-inflammatories.

Of all the things in the world to say. As if OTC anti-inflammatories are on the list of concerns!

My MO thinks I'm nuts when I say anything about Herceptin causing any of these symptoms. It was bad after my first H-only infusion, too--her response was that I may have had a "little flu." Second and third infusions didn't cause any muscle pain or fatigue, but the fourth (this past one) was hard. The steroids thing occurred to me, too, but I'd just as soon never take Decadron again, given the reactions I had to it during chemo.

To top it off, we've delayed my next echo, because I'm getting left-sided chest-wall rads--I can't imagine what it would be like to have an ultrasound probe jammed into my ribs just now. Fingers crossed that my mitral valve is behaving itself this time around. That was another mystery: trace regurgitation on my baseline echo; then it went away; then it became "mild." As long as it stays mild, I guess I'm okay with it, since there's not much that can be done about it.

DOES THIS NEVER END?

Springtime's post on the tamoxifen thread, brings up muscle cramping and muscle tearing.

Click here for Tamoxifen thread

So I did not start Tamoxifen for a while - after two doses of just herceptin. Once I did, it didn't seem to worsen the symptoms. I know Tamoxifen can do it, but my problems started before the tamoxifen did. Anyway, yes, it seems like I injure one joint and then a few weeks later, it sort of improves and something else goes. The slightest provacation will cause an injury. It is highly frustrating. I've given up on not taking meds for it- I alternate ibuprofen, tylenol, ativan and percocet. Hate doing it, but sometimes the narcotic specifically, offers me a break from the unremitting pain.

Mostly I just really hope it goes away when I'm done. I have 6 cycles left, I understand this really can be a life saving drug, but I would not want to survive if I had to feel like this forever. But I try not to think that way. I'm pretty sure it will go away when I'm done. In the meantime... just trying to have a decent life right now!

From what I've seen posted on this board, running Herceptin for 90 minutes can really help. Special K? Mine was run at 60 minutes and I wish I had them run it at 90. One other thing I wanted to mention is that I drank 2 quarts off water every day for my year of treatment.

Sorry to be repetitious to those who have been here for a while, but this questions comes up periodically. I had Herceptin over 90 mins when I was concurrently receiving Taxotere and Carboplatin.  The infusion instructions from the manufacturer indicate it can be run anywhere from 30-90 mins once the loading dose has been given and tolerated without incident.  I did not have bone or joint pain during chemo proper, but on the first Herceptin only infusion - run over 30 mins - I had debilitating pain, so severe I could not stay in any position longer than 15 mins, including laying down to sleep.  The pain lasted for several days.  On the subsequent infusions I requested that we revert back to 90 mins, and never had another problem.  There are long-time members who had no issues with a faster infusion, but anecdotally, there are enough of us who have done better with a longer infusion time that it is worth trying if you experience discomfort.

Me, too, on the 90 minutes... I had 45 minutes this last time and I feel like garbage! Definitely makes a difference for me.

I second the notion that 90 minutes is better. My oncologist said my aching thigh pain was due to carboplatin and that drug took a long time to clear. Lymphatic massage by an oncology massage therapist helped greatly

Runaway - I'm a PA and I hate it how my MO treats me like I should know better. Seriously...these symptoms are real!!! I realize it may not be the 'norm' but what ever happened to listening to your patients? I'm not making this shit up...I'm in pain! Ugh.

Anyway, I'm treating with 2.5 mg Percocet, Ativan, or Fiorcet (I know it's for migraines but it helps). I alternate the meds as best I can. I can't take NDAIDS because I've had gastric bypass so I'm trying to get by with what I have left over from surgery.

Only 2 more Herceptin to go and hopefully the pain will go away. I'm REALLY hoping the pain is from Herceptin and not Tamoxifen because I still have 9 years and 9 months of that...

i am currently doing 90 minutes. Did anyone see the article on BCO today about neratinib? Anyone in the clinical trial on here or thinking about it?

I would totally take neratinib (and prophylactic Imodium) if given the opportunity.

I plan to ask my MO about it when I see her in March.

i had to stop H after 2nd only H infusion due to my heart EF. I'll always wonder if I had had it slower if it would not have been so bad that I had to stop. But whatever. So far so good.

My AI, gives me trigger fingers and aches and pains. I just had a cortisone shot in my shoulder on Tuesday.

Rotator Cuff acting up. I've had those trigger fingers since bout 6 months after Arimidex. But overall it will be 4 years for that in August. As long as cortisone shots help me open my hand after I pick things up, I'll live with it. My bone density isn't great but not osteoporosis yet. And my dental Xrays show no bone loss so I'm grateful.

Much live to all