Is There A September 2011 Chemo Group?

belle, didn't think to ask about that node on the phone. thank you for the reminder. i will be putting together a list of questions that i now have. she also mentioned TDM as a treatment option she was discussing with its researchers. not sure if that means i would be part of a clinical trial.

I'm so sorry CJRT... I don't even have the words to express how wrong this is on so many levels.



Your age.... 1st of all. I'm appalled you have to deal with this so young.

Treatment.....You would think pumping all that poison in us would at least give a couple of years break from fighting this disease. How do those bastard cancer cells survive all that?



I know you don't know your treatment yet and are in that horrible 1st stage of shock and the unknown, please know your in our prayers.



Re treatment.... I could be wrong, but I don't believe they will put you through chemo again. I believe it will be radiation to the area, a bone drug like Zometa, plus Herceptin again as you mentioned. It's my understanding that Zometa is pretty well tolerated. I apologize if this sounds weird, but its my understanding that if its going to metastasize, the bone is better than organ and that lots of women who get treated for the bone can go NED for many many many years, as Belle stated. It sounds like they caught it really early. That the tear from exercising may have been causing the pain, which led to them finding it. Praying that is the case. That they can zap those stray cells, and strengthen the bone. Hugs.

i was caught off guard when i was on the phone with her and did not realize it was a clinical trial until i researched the drug. i would have to do more research but i think i would try anything that seems positive. i don't exactly know what is involved with clinical trials. i remember one or two of the ladies originally in this group were in some. i am wondering if i should get an online second opinion from partners healthcare, mayo or somewhere like that. trying to figure out a game plan.

Also, I wonder if you are eligible for vaccine trials? Those are looking very promising too I think.  

Thanks for all your advice and input.

Ccjj- thanks for letting me know a little more of what to expect

Cooka- there is a national cancer site 5 hrs from me. My treatment center works with them. I am going to look into a face to face 2nd opinion there. Great idea about the vaccines. My sister has a medical background so I will have her research it too.

Belle- definitely agree with you about preferring tried and true. The weird thing is that my 3.5 cm breast tumor shrunk to undetectable on MRI after 3 rounds of chemo and herceptin and this was confirmed with pathology from my BMX. I don't understand how treatment worked so well elsewhere but there is this random spot.

CJRT.. I know it doesn't help to dwell on how this happened, but I would also be curious what your MO has to say about your breast tumor responding so well to the chemo but now a random spot. One thing I read recently is that in studies, about 7% of the time when the sential node came back neg and more nodes were removed as part of the study, cancer was then found in 1 or more nodes. It became standard of care to test only the sential node since 93% of the time it was accurate and obviously decreased the LE risk dramatically. Still, even if you happened to be in that 7%, you would think the chemo would have taken care of any stray cells in your other nodes. Also, your treatment wouldn't have changed had you had pos nodes.



Did you have any scans when first dx? Do they still think the hip pain was caused by an exercise injury and not the stray cells? Or maybe the spot caused the tear? Only reason I mention it, is you may have found the spot earlier than most as a fluke if the pain was exclusively due to the exercise injury. Many more of us may be walking around with stray cells at his point that haven't become apparent yet.



Re clinical trial... I would def look into. Odds are they add the study drug to existing standard of care. So you wouldn't be losing out on the current treatment, but could benefit from the addition of the study drug.



Hugs..

Cjrt,enjoy your daughter's birthday and the weekend! Have a great one. I've watched 2 of my grandkid's 5 and 4 yrs old 4 days this week. I usually have them 3 days, they keep me going when sometimes I'd rather stay in bed! LOL

Thanks,Rj, me,too! I kinda like that I got a breast MRI in jan,2012,mammo in July,2012 and now MRI in jan this year. Works out to something every 6 months! Although how the follow-up MRI in 6 months will affect that I don't know. It's scary that the bone scan CJRT had did not pick up her mets! I've been wanting one for my peace of mine but MO won't do it.

Thanks, ccjj. Yes, there are many parallels between us. I am sending all my medical records today to a mets program that seems more aggressive, so I will see what they say. I will keep you posted after my appointment today and then hopefully will be able to go over that information and my other questions with my MO asap. Thank you for your positive words and for giving me a better idea of the typical course with a bone lesion.

Wow,CJRT that is a lot to take in!!! I am sorry you have to be in a wheelchair but better safe than sorry!! Ughhhh,more surgery sucks but it's good they will be able to reinforce the femur! sounds like the spot is bigger than originally thought,but the radiation will still zap that bugger!!! One thing,where is the lymph node that lit up,is it in the armpit or pelvis area? if in the arm area,could it be lit up because of an infection or scar tissue,sometimes if you are sick they can light up! will they double check it and do a biopsy?

Always in my prayers and thoughts. You have a hard road ahead with the hip surgery down the road but you CAN do it!!!

CJRT: I haven't been on here in a while - came back to check after belleeast clued me on on what was going on.  HOW TERRIBLE.  It is not want any of us want to have to go through this whole process again.  I am very sorry you have to face this but please know that we are behind you 100% of the way.  And I agree with everyone.... if I had to have a mestasis - i would choose the bones.  From articles/blogs I have read, people live very long lives with bone mets.  I am not trying to make it sound like what you are facing is a walk in the park - because lets face it... cancer bites the big one and treatment for it bites the big one even more.  I'm just trying to help pull you out of the dark side.  You can and will be there to see your beautiful children grow up. 

I will be on here more often to stay in touch with my lovely cancer sisters!! Love you all and we need each other for support in ways that a non-cancer person cant provide.  Our caregivers are awesome.... but we know the ins and outs of where cancer takes you. 

CJRT,as we all know waiting is one of the hardest things to do! Hope this next week goes by easily and quickly for you! Did u get a wheelchair,how is that going? Remember,don't be doing any wheelies!!! Maybe, just a few races! In my thoughts and prayers,you and yours!!

belle- thank you! you made me laugh. i got a wheelchair but am only using it when i go out of the house, so I have someone to push me. even though i am in decent cardio shape, i am embarassed to say that i have a hard time wheeling myself because my pecs are so weak since the mastectomy and recon. i am using the crutches in the house. i spoke to my MO today and will be seeing the RO tomorrow to speed the waiting process. as for the taste buds, i haven't noticed anything at this point....but now you have me wanting one of those truffles.

CJRT....I think it's good they are double checking all the pathology. Your team sounds very good. You probably are aware, but wanted to make sure you saw the

30-40 yr old group on the stage IV board. You might be able to connect with others your age, with young kids, going through similar treatment. But don't leave us here.

Re: hip replacement. Can't they just replace it now? Get all plastic parts in there so the cancer has less places to go. I'm sure there is a reason they don't do it, but just seems like would make sense. Great news he confirmed there are no other spots. Hopefully you can get that pesky node figured out soon. Maybe your MO can better explain the spread with no initial node involvement. Is the hip lesion on the same side your bc was?



Belle... I haven't noticed any taste changes, but I'm still trying to drop the chemo weight I put on, so everything I eat these days is boring. Where do you order the truffles from? They sound delish!