TRIPLE POSITIVE GROUP

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!

I wanted to share the I saw a massage therapist that did oncology massage and it was amazing! She belonged to a professional society of oncology massage therapist. Before I walked put her door I felt that the fluid was finally moving in my leg. Three days later my feet has decreased in size and I can wear different shoes. My feet have been so swollen for 6 weeks there was only one pair of shoes I could wear. Wish my doc had told me about this great resource

Minivan - great news that the massage therapy helped! Amazing what these therapists can do. Not sure why more MOs don't address supportive care services like PT, massage therapy, pain management docs, etc. Even if they just provided patients with a list of possible resources.

Jerseygirl927 - Sorry you are experiencing pain and hope it is improving today

I took the claritin the day of and the day after neulasta. not the claritin D, just the regular kind. Man, the first time i didnt know about it, and it DOES hurt. i wasnt warned at all, so besides hurting i was scared. it really helped the second time, and it wasnt my treatment place that told me, it was a neighbor who was stage 4 and had been through it. she was freshly stage 4, when i was found to have bc, and i miss her dreadfully.

Why are u glad there is foamy pee? Doesn't that mean there is excess protein in yur urine? Kan meen a kidnee prob.

I am glad that some mentioned the foam in urine, I also notice that it starts after my chemo, I did have urine analysis and the protein is fine, however I do have extra WBC in urine indicating slight infection. My MO perscrives antibiotic and the foam is still there after finish the whole bottle. I guess that it is due to chemo drug, If I don't drink a lot of water, I can feel irratated bladder

ache are just subsiding from neulista, talk to my nurse navigator and she said it's ok to keep taking the clariton, so next time doing it day before, day of, and for how many days this takes. I am upset because I have a new chemo schedule, they extended it by 2 more chemo treatments, into July. I asked the chemo nurse and she said this can happen, NOT happy,, but will talk to nurse to see if they are making it smaller dose, ? Which, I am thinking, but wanted this done done done. I am noticing a slight numbing in my two fingers now, on right side which goes with the 3 toes on right foot, very slight but it's there. Mentioned to Dr and he noted but said in the grand scheme of things, will watch for numbing of those area or worse. Hello it's my body.....

Bad stomach issues with hercepton yesterday, and heart rate rising, Guess I have to rest more?

Anyone doing the share the journey trials ? I am, lots to complain about sleep, fatigue, exercise, which is NIL.

Ok gals hubby having surgery today for foot, say an extra prayer please, God know no time! Thanks

are you sure stomach issues are from herceptin and not perjeta? Just checking because perjeta tends to have GI effects.. I'm currently taking herceptin alone and it's pretty symptom free minus heart impacts

Hello All you +++'s,

Thanks for sharing all your info and insight. I was wondering for those of you still within child bearing years, after doing chemo (TCH), did your reproductive system recover and were you able to become pregnant or did you need help? I have done alot of research since being diagnosed in January, my first freak out was about losing my hair (how silly right!?) then I realized there was something way more important at stake which was having kids because I have waited to find my perfect partner and thus it's set me back in the plan of life that we all dream of as kids. I'm 38 and a little late to the dance but it's still part of our dream that we were working on when I was Dx. I have some Tx decisions to make to ensure that can happen one way or another. Thoughts

oh yes about herceptin, th chemical name is taxoter, and yes that is. Side effect, that is why they do a base line echo cardio gram that measures different things about your heart, so they can re measure to see if there is any damage to be measured. It can also cause congestive heart failure. That is a big concern, so I slow down or stop doing when I get winded. But some of the other side effects make me crazy and I'll. today was a good day. Thank you God...

I also ended up with heart failure (although mild) when I had started Herceptin, of course because I was "symptomatic" my Herceptin was stopped altogether. So, I only received 4 doses of it and being a triple positive HER2 cancer, stage 2, grade 3.... it's freaking me out. I have had a double mastectomy but am so scared of finding cancer again somewhere on me!  Anyone know what the odds are if only got 4 doses of Herceptin versus the full 14 doses I was told I would get?  Would appreciate any information on this subject. thanks

Hi Everyone, I am just joining this group. Is anyone here on the TDM1 trial? I am newly diagnosed. Lumpectomy 2 weeks ago, starting chemo in 2 weeks. Either Herceptin/Taxol vs the TDM1 trial. Wondering if anyone here has been faced with the same option and decision?

I am interested in the trial if I can avoid the Taxol, but also want to receive the "tried and true" for HER2+... very torn with this decision.

Thank you and hope you are all having a good day.