Phone call: Stage IV BC

Bless you Bette.....I pray your Guardian Angel works overtime to keep you from worrying and to give you peace and comfort. ((((((((((((((((((((gentle hugs))))))))))))))))))))

Bette,

I hope you find strength in your doctors. Know that we are with you in spirit. Hugs, Mazy

Bette, I just thought I would chime in here.  My oncologist told me about a patient of his, stage IV IBC, many,many years later, doing well, 2 more children and enjoying life.  He also had another IBC patient, stage IV, who did stem cell transplant and doing very well.  I know that stem cell transplants for solid tumors are still controversial, but it appears that there are many options out there, PARP trials, transplants, targeted therapies.  You have the advantage of being in good health, with no cormorbid factors, hang in there, baby.  Maryiz

Dear Bette,

I am just chiming in here to wish you the best during these few days of appointments and exams. I know that people poking and proding at you can be so draining and scary. I found out in January that I had mets to the bone and small ones in the lung and it was definitely a shock to the system. Please allow yourself time to do whatever you need to do - rant, cry, wonder about the "what ifs..", sleep, eat...It is so important to allow your feelings to be expressed. I have no doubt that given some time you will feel more energized and capable of moving forward in your life. Living with mets is possible and for most, life continues to be meaningful and comfort for a long period of time. It sounds like you have a supportive network available to you and of course, you have this site to come to. Please keep us updated. Many wishes for a smooth few days. Take good care, Joani

Bette, good luck with all your scans, sweetie!.....Can I just say again, THIS SUCKS!.....I am so sorry you are goin through this, but like the other ladies said, the power of prayer is amazing!.....I am not stage 4 but I do wish to extend my support and heartfelt prayers to you......((((Bette))))

I do believe in the power of prayer.  God ALWAYS answers prayer; sometimes his answer is yes, sometimes it's no, sometimes it's not now.  That said, I'd like to relate an experience I had that made me a believer in the power of prayer.

Within weeks after my 2nd son was born, he developed a fever and wouldn't nurse.  I took him to the pediatrician in the middle of the night, then to the ER where they did a spinal tap, etc.  They couldn't immediately ascertain what was wrong, but they knew they had to admit him because he wasn't eating and he had the fever.  I called our Pastor to ask for prayer.  At that time they were meeting on Thursday mornings at a member's house for group prayer.  They met at 1 PM.  Shortly after 1 PM that day, my son's fever broke, he perked up and started getting better.  We later found out that he had Coxackie virus type II.  Some people would say it was coincidence that he rallied at the exact time they were praying for him.  I don't believe that.  I believe that God directly answered that prayer.  

Bette...Congrats!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Bettelou,

I also have IBC.  Dx 6/09 after having been dx with IDC in 4/08.  You asked about Xeloda.  My local onc. referred me to MD Anderson.  I had an appt. there on July 9.  On July 10, I started taking  Xeloda and Tykerb.  (I took Adriamycin, Cytoxin, Taxol and Herceptin last year.)  After only 1 day of the new chemo drugs (which are both oral instead of infusions, by the way) I could see improvement in my rash.  Today, is Aug. 6.  It has not even yet been a month of being on these drugs, but my rash is totally gone.  All I have is some skin discoloration that is slowly fading.  I am very fair-skinned and scar easily, so I know that is why the skin is still discolored from under where the rash was but it is definitely going away.  The rash has actually been totally gone for at least a week -- meaning that it took only about 3 weeks for these new drugs to really work for me.  

You are going to do fine.  And, like all these other women have told you, absolutely prayers work and God is with you every single second of every single day of your Life.  He IS there.  Feel Him and be comforted in knowing that you are a child of God.  Cancer is a word.  Not a sentence. 

Side effects I am having include lots of diarrhea, numb tingly hands which are also extremely dry and getting lots of little cuts all over my fingertips just like when I took Taxol and acne.  Now, remember, I am on Tykerb AND Xeloda, so I don't know which SEs are from which drug.  The diarrhea is the most problematic, but if the drugs are killing cancer cells, I can live with these side effects.

Bette, am praying for your peace and healing, strengh and courage to get through this and you will with the Lord by your side.  God be with you and will be thinking of you.  Please let us know how you do.  sending hugs and love.

So glad you got a start date and pray it works.  It is hard to lose your hair but it will grow back.  You can have some more fun with scarves and wigs and hats,  I mostly wore doo rags out of bandanas and my teenage grandson wore them with me.  Wishing you the very best.