TRIPLE POSITIVE GROUP

tonlee - I had pain prior to BC due to disk issues.  I have had pain since diagnosis due to Femara and Arimidex, so it is hard to suss out what is causing what.  I had bad knee pain in '13 to warrant a cortisone injection into the knee - which solved the problem.  I had new and intense hip pain last fall - had lumbar and bi-lat MRIs which yielded no mets - thank goodness - but a host of orthopedic crap - thoracic bone spurs, more crumbling and bulging disks, trochanteric bursitis and fluid and stress tears in the gluteus medius muscle (the aforementioned hip pain), and some narrowing verging on spinal stenosis - so I start a month of twice weekly PT this afternoon - yay!  Not helpful in all this is that continued reconstruction issues have made consistent exercise problematic, but I would assume that you have been in the gym, correct?  Sorry you are in pain - it is no fun.

Hi TonLee!

I've had the aches and pains that accompany AI's since day I started them but they were fleeting, intermittent and most often occurred when getting up after sitting or laying in place for awhile.

This fall, at just about the 21/2 year mark my hip , my hands & general aches felt worse . My MO was betting on arthritis but ordered an X-ray and there was no sign of it. I had had my DEXA and was holding my own on slight osteopenia.

The plan was to wait till I got back in April and take me off anastrozole for a month. He said we should see very quickly if it was the med and proceed from there.

Wish I'd done it then because everything has gotten worse . My joints get stiff and many simple tasks.... Chopping, changing pillowcase etc are difficult . My back aches have meant stopping my daily 2 mile walks. Can't sit or stand for any length of time with out aching.

I'll be seeing him in a few weeks . Will let you know.

For those who are experiencing cramps and leg restlessness, I take magnesium and it helps immensely

Jeeper - how big was your microinvasion?

hi Jeeper, I'm sorry you have had to enter the confusing world of small Her2 positive tumors! If your pathology report described only micro invasion this means the invasive portion was less than 1 mm in greatest dimension. It is actually a separate stage, Tmic. T1a is for 1-5mm. I have never heard an oncologist recommend targeted therapy or chemo for Tmic. There is quite a bit of controversy about whether or not to treat T1a tumors with targeted therapy or chemo. At 4mm, I got different recommendations from different oncologists, and eventually settled on the Taxol and Herceptin therapy although several of them said it would be quite reasonable to only treat the hormonal aspect of the tumor. You might well feel more comfortable with a second opinion. I got several because I found this so confusing. Her2 is scary but the very small tumors are thought to behave much less aggressively then the larger tumors. I actually sent my slides to a university center for review as well, since a couple millimeters one way or the other makes a big difference in treatment plans. They ended up agreeing with the first interpretation but I felt better anyway.

I hope you get the information you need soon to be confident with your treatment plan. The beginning stages of figuring this out were by far the hardest for many of us!

knmtwins - I find a good dose for me is around 350mg. You can take more, unused magnesium is passed through the body. If you take too much it can cause diarreah. Of course if you have constipation, then extra magnesium may help with that too!

jeeper - it is also common to have increased anxiety as you exit the phase of more active treatment - it is kind of a "what now?" thing, fueled by feeling you are not doing as much to keep this at bay.  I think often this is the time when the entirety of what has happened hits you too.  You are indeed caught in a no man's land with a microinvasion - what is too little, and what is too much in terms of treatment - particularly with Her2+.  You are not alone in this - the rest of us with larger invasive components also wonder if we undertreated and have increased risk - for me it was not having rads - or overtreated and now have permanent impact or side effects.  All of this is a crapshoot, unfortunately, but take a deep breath and look forward, not back.

I am in limbo right now as last week blood levels were off, so dr said no chemo, go to ER for fluids, that was Thursday , well I have been trying to find out every day since then if they want me back for hercepton infusion, or 3 rd chemo round? Very anxious about doing nothing, but also I could look at it as a break from chemo etc.... I hate this, still no answer from Drs office. I could scream. Just still mad that I got cancer at all, did anyone else freak, or just plain shut down mentally?

Oops sorry, an anti anxiety, and cried continually. Couldn't eat. Was losing a pound a day. Wish I could do that now, lol.

Susan...I still subscribe to Oncology Times and I'm not a nurse. My late onc used to laugh when I asked him about treatments for other cancers during yoga. There were people with lots of different things there. If I gained one thing from this whole adventure, it is that I love to research the science stuff. It is fascinating .

Tonlee-hi! Long time no hear. Glad you are doing well...sort of. I had great density when I started....it dropped after chemo but was normal and then dropped some more now with a couple spots below normal. I had one Prolia shot last October and will have another next month. I don't think I had any side effects, but I also was switched over to Arimidex last May, from Tamoxifen, and was having a lot of joint pain . Im not sure I would have have known which was which

Jersey girl, freaking out is a normal response. Who wouldn't freak out when told they have cancer!?! I cried a lot when first diagnosed. I read so many bad things about being Her2 positive. Not being able to see my kiddos grow up terrified me. Eventually I found this thread and all the wonderful ladies here that helped me see it wasn't as bad as it used to be. I'm almost a year out now and feel great. It will get better

thanks gals, mo already said I was cancer free but protocol calls for this poison, I realize the her2+ is the crazy freaky part, we shall see what happens thurs if blood is good we are a go, if not we are a no? Keep me in your prayers and I add you all to mine every night.

I have not understood it all about the different types of cancer. The ILC was found first and a slightly .02 centimeter tumor the ductol was the second one found but only on an MRI prior to surgery so since I as doing double mast they biopsed it at surgery. But Both clear definitions of either, am not sure if one is worse than other. Other IDS the tumor was .06 all margins clear both. The her2+ was what had me more scared because of the mutation level of this protein in the receptor part of the genes. I try to learn as much as I can about the BS rumors and diagnosis but you only usually concentrate on your own info. I did join Gildas and we have a monthly BC group and we learn more there and share side effects, treatment and how long one is a survivor.. Very nice to belong, so if any of you can find a group go join, some nice perks.

Maryann

TonLee - before BC I had moderate spinal osteoporosis along with osteopenia bilaterally in my femoral heads. Found out when I fell and fractured my spine. As part of that work up, scans showed a burst fracture at T5 along with several vertebral compression fractures in the cervical area along with T1 and T2.

For my BC I'm being treated with TDM1 and have not noticed a change in my pain level. The compression fractures were painless before and remain so. T5 hurt badly on a regular basis and that pain continued until I went to pain management. I blame that on the burst fx sustained in my fall rather than the osteoporosis itself.

When sleep became an issue I saw an oncological pain specialist who prescribed Tramadol to take as needed for my pain along with a very low dose of Nortriptyline to take on a nightly basis. He said it would take a couple of months for the Nortriptyline to reach a beneficial level, but now after 2 months I see a huge difference. Rarely need tramadol any longer and Nortriptyline makes you drowsy so I take it at bedtime and sleep well.

I'm sorry you are in pain and hope you get relief soon!

Jerseygirl927 - thanks for the epsom salt idea. A relaxing bath is just what I need! Finally past the post op "shower only" limitations with my port so I will celebrate with a nice, long bath :-)

Seeing my pain management docs again next week for follow up and pleased I can report to them that their treatment has been successful! Pain is greatly reduced. My other docs (MO, plastics, etc) are also happy to have pain management docs onboard so they can coordinate that area and my result is a more cohesive approach.

Don't remember seeing if you ever got your chemo timing issue worked out? Hope all is well and back to normal for you!