Good News At Last

    • Anonymous
      April 1, 2011 at 10:59 pm

      Had good news from the surgeon yesterday. My lumpectomy was done Mon.
      and the results were good. The surrounding tissue, and the lymph node were neg. The nasty cancerous tumor was removed and I’ll probably for sure have
      to have radiation (maybe chemo??). I see my surgeon, Tues., then my onocologist, then my neuro doc. I have a whole list of questions about my treatment. I’m pretty worried cause I have never recovered my strenghth and
      I’m still so weak since my shoulder surgery in Jan. My last IVIG treatment was 3/7 but I don’t think that even started to help till a week before my breast surgery.
      One thing for sure, I am going to do everything I know to get a final dx from my
      Neuro. Too many things are happening now ( I have really been keeping him informed of what’s been happening with me) and new things that are really scarey! Most of them happened after my shoulder surgery, but believe me they
      weren’t the normal recover from your surgery symptoms. But for now I’ll focus on the good news, what a relief.
      If there is anything you all can think of I need to ask my doc’s, I’d sure appreciate it.

      God Bless,
      Ms. Judy

    • April 2, 2011 at 8:35 am

      You have a fighting spirit and a very perceptive and realistic nature. I can see you are tackling all of this head on and I know you will be victorious.
      I can’t think of any questions at the moment, but I’m wondering if the chemotherapy could possibly have a healing effect on your other issues.
      I’m with you in thought and prayers and I admire your great attitude and the way you are accomplishing a comeback in health and strength while coordinating more than just one challenge. You’re tackling them all in a timely fashion.
      God Bless You!

    • Anonymous
      April 2, 2011 at 10:52 am

      Congratulations on the negative findings.

      As for questions, I do have some of my own. So, I’ll donate them to you.

      1. From the Oncology perspective, which Chemo treatment choices are known to have immediate and, or, long term neurological consequences?

      2. ditto for radiation.

      3. When the Oncology Dr and the Neurologist consider treatment choices can they be combined in some way so that you get the benefit of both Chemo for cancer and the best dose of chemo as if you were only treating for CIDP?

      4. If the selected radiation dose is very site specific, in other words- targeted and limited, then I would ask is the targeted beam near any of the nerves I have trouble with? If so can the beam be adjusted?

      Good luck.

    • Anonymous
      April 2, 2011 at 4:57 pm

      Thank you so much Yuehan, the questions you presented are ones I never would of thought to ask! I wish I could somehow fly you to St.Louis and
      take you to my appt. with me!! You’re a gem and sooo smart…don’t mean to
      give you a large head on your shoulders but some of the people on this forum
      have been so helpful and supportive. Thank you Katy for your encouraging
      words, I don’t know about anybody else but I think I get most of my strenghth
      from hearing all of your stories, the unbelievable struggles and pain we all share
      and some more than others and the strenghth we all somehow get from sharing
      our feelings. Today, I’m happy, the sun is warming my heart and soul and I’m happy.

      God Bless,
      Ms. Judy

    • Anonymous
      April 2, 2011 at 11:57 pm

      ultmately determine if you get radiation, IF you’ve a clear and contained tumor of Stage one or Stage two? {some stage twos, that is..] Usually rads are not done these days. Chemo? Can be of two types, so beware One is the Chemo you get in an infusion therapy room? The other are various estrogen blockers ‘called post treatment therapies’, which are …essentially chemotherapy in their own right.
      As for any of these treatments affecting balance and nerve pain? YES they can and at times do. Chemo can cause added neuropathy pain, and many medications for post treatment can and do mess us the whole neuropathy aspects as well. It’s up to you to educate yourself and then decide what you are going to go with!
      If you’ve higher than a Stage 2? Then really sit down with both your oncologist AND your neurologist and see if you can get THOSE two docs to discuss out the pros and cons of any given treatment.
      One thing I HAVE learned, as I’ve had several surgeries for cancer and other things since? IS that IF you wait 7-10 days after your last infusion, you get benefit from it[for the CIDP]? And still enuf left to help avoid extra problems because you’ve still got enuf IG in you to work on your new problem rather than the CIDP problem.. Robbing Peter to pay Paul in a way? But, I’ve not gotten any post surgical infections or the like since I’ve been on IVIG!
      I hope this helps!
      The waiting for the biopsy results is one awful aspect! Kind of like waiting for the Spinal and blood work-ups for diagnosing CIDP!
      Keep faith and keep it postitive! Hope and good things!

    • Anonymous
      April 3, 2011 at 10:37 am

      Ms. Judy- Thanks for your kind words. The beauty and benefit of this forum is for anyone to share and learn whatever they can.

      I did, in fact, drive right through St. Louis on my way to and from Mayo Clinic.

      What I do for my doctor’s appointments is to prepare a written list. For this situation I would research two things-

      1. Find out which Chemo treatments for CIDP are most often mentioned as helpful on this forum.

      2. Go to the link emily’s_mom gave us for Dr. Lewis.

      One of those tabs has a treatment options sections. I would write down all of those treatments.


      Unfortunately, his entire article has changed appearance, and worse, treatment contents. sigh, how sad! the moral- if you find a page you like you better copy it and save it. At least the article still has a list of meds.

      Then, combine those two lists from a Chemo prospective and then make a list of questions for the Chemo meeting. In fact, make two identical lists. That way you hold one copy and hand the other copy to the doctor. Then you both see, at the same time, what you want to discuss.

    • April 3, 2011 at 11:07 am

      Hi Judy,
      great news! i am happy that you are able to find a positive ray of light. i believe the amount of chemo for bc is half of what they use for cidp. would you consider talking w/your neuro and asking him to confer with the onc. to see if maybe since you may need chemo anyway, maybe you could try to battle both simultaneously. my memory is usually good, but i have been under much stress lateley, so maybe another member can remember this person’s name, she was at the chicago symposium and i think she might be a nurse. in any event, she had bc and did do the chemo and her cidp got better i believe, but i think it did return. i am almost certeain she did the bc dose of chemo and not cidp. about the radiation only as an option, is the doc set on no chemo? is there a possibility that the link between general inflamation in the body causing cancer and your having cidp could be a reason to try the chemo as well, meaning that the coninued cidp could perpetuate additional cancer or recurrence? Judy, I think that although the bc card was dealt, it could be your saving grace in erradicating the cidp simultaneously. I am praying for you. God does work his miracles in mysterious ways. keep on seeing the shining sun as you stated in your first post. Sonn the spring weather will be here and everything will be renewed!!

    • Anonymous
      April 6, 2011 at 10:44 am

      Good luck Ms. Judy and hang in there. You always seem so sweet on this forum and so positive. You are strong and you will get through this!