Faslodex/Ibrance/hurry up and wait

[Sugarbaker60]

Ibrance w/Faslodex day 5. Nausea managed. Leg cramps started at 5 am this morning. I quit letrazole last time I had cancer bc the pain was too much. I got clean margins that time but this time they want four months of treatment before considering surgery.... has anyone done the Proton Therspy at MD Anderson or Emory?

[Hidden]

Hi Sugarbaker60 -

I'm sorry, I don't have experience with the proton therapy, but am eager to see what you (we) learn here from other responses. I'm trying to figure out sort of who gets rads and why, so I'm hoping you can describe "why" they're considering the proton therapy, e.g. pain? issues with where the mets are? or "only" to beat back the disease?

BTW, re: the pain from the leg cramps, there's been discussion here about magnesium and/or potassium deficiencies causing this - both of which are pretty easily dealth with through diet/supplements. I had similar, especially while on Ibrance + Let, and an Rx for Potassium seemed to do the trick (plus lots of avocados...).

P.s. It took me a minute to get the "Designing Women" reference in your name/pic!

Best wishes,

Lynn

[USIrishcolleen]

SugarBaker60,

I was just reading about the proton therapy. Does that replace traditional radiation therapy? I have a partial mastectomy, sentinel lymph node biopsy, and possible right axillary lymph node dissection on 12/4, and then I will begin radiation after my wound heals. Wish I did not have to do the radiation, but because I have lymph nodes involved they recommend it.

I do not know if they recommend the proton therapy for my situation.

Best,

Colleen

[Sugarbaker60 in reply to USIrishcolleen]

I have two very small spots , one on my windpipe and one on my lung. Biopsies show cancer in one and no definitive answer in the other. I am looking into proton therapy bc of the delicate locations of these two new spots which moved me into the stage 4 category. I am asking for a referral to Emory ‘s Proton Program for evaluation. If they could eliminate these two spots then a double mastectomy would put me in a much more comfortable space for my prognosis....thanks for the info about magnesium and potassium but I thought the pain was due to the leeching of estrogen from my bones....my onc has not said anything about supplements only Tylenol or Aleve and my answer to her is next time she has to be run over by a car to bite on a stick and see if it helps!!!

[mariootsi]

I would be very interested in more info on the proton therapy and when and why it's used.

[8576]

Hi; Sounds to me like you could use a second opinion. That doesn't mean your current team is not making the right decisions. It only is a way of making sure you have the best treatment possible. At least that is why I ask for it when I feel it is necessary.

I do not know much about Proton Therapy and I live in Canada. I think it is approved for use here but mainly used for Prostrate Cancer. Not sure why. I know at your Mayo clinic they use Proton and you don't need a referral. You can just book an appointment for assessment. Apparently they use it primarily for child cancers and brain cancers. The concept is that it is more able to reach the target without damaging surrounding organs or tissue. This is general info. Check with Mayo or other hospitals for exact info.

Wishing you well and let us know how you make out.

Cheers, June S.