Has anyone started a forum for Chemo in Dec 2008?

Just catching up on the most recent page and wanted to send my good wished to Caroline, Bold and everyone else experiencing scary symptoms, tests, etc. 

I'm having my usual back problems and also having some pain in the area where my implant was removed -- think it is from scar tissue that makes the area feel tight and uncomfortable.  The same thing happened with both implants, so maybe this is just my body's way of being difficult.  Otherwise, healing seems to be happening slowly and I'm almost ready to look into getting a prosthetic.  I haven't totally shut out the idea of future reconstruction, but would have to find a PS who has experience with the kind of problems I've experienced.

My father has been in ICU for the past several days -- he fell last week and then his emphysema and heart problems got worse because he wasn't taking his meds properly.  We almost lost him a couple of days ago, but he is improving now and will be moved to a regular room later today.  I doubt that he will be able to live independently again, but time will tell.

Caroline -- I've had the ultrasound where you have to drink all that water first.  They need you to have a full bladder and 32 ounces is the suggested amount to drink, so drink the fluid right before the test and stop drinking when your bladder feels full.  I think I drank about 24-26 oz. and that was plenty.

Bonnie, I'm so glad to hear that your dad is doing better.  It's hard to face the fact that our parents need help with activities of daily living, even harder for them to accept that.  Even if it's just managing meds and nutritious meals.  It's the leaving their home that is hard.  Or allowing someone else to come in to make sure they do things right.  A loss of independence.  PM me if you want any advise.  It's part of what I do for a living.  Helping families help their parents make that transition.

Texas, you know me.  Only I can have the weirdest and most obsolete SE and complications.  Well, ok, you're right up there with me.  But yes,  I look so much better and once the pain and iron bra feeling goes away, I'm sure I'll feel better too.  Having my implants laying on my bottom ribs was not comfortable nor was getting them hiked up to be in boobie position.  But, god, I hope this is it.  If not, I'll be tempted to join Bonnie in the au naturale club.  Congratulations on being all healed up from everything.  Open wounds suck. 

I would just ask him again to Please humor me.  If he won't, start taking a D3 supplement.  I take 1000 IUs twice a day.  My retired doc told me you can't overdose on D.  I don't know if that's true or not.  I'm sure someone here does or pop over to the natural girls thread and ask.  They've always been very helpful to me.  My current PCP is not a huge believer in supplements.  I just add what I think I need based on my own self education and ask her if it's ok to take it.  So far she's always said Sure, it won't hurt you.  I know this isn't the best way.  But it's the only way I have for now.

Hi Texas!

Most main-stream oncologists are mainly interested in drugs--at least that has been my experience.  When they were going to put me on an AI, I asked if they were going to test my estrogen levels.  I was told, we don't need to. It made no sense to me so I went to my internist (I guess you'd call her my PCP) and got my levels tested---sent them to the onc--I was not in menopause or close to it, something necessary for treatment with an AI.   I can't figure out what makes oncologists tick, but I just research each and every suggestion.  

On the other hand,  you can see an integrative doctor once or twice a year for tests and discussion. It might be worth your time to have one consultation. I have one that I see once a year because he thinks of things that my internist might not.   My internist runs all of thse estrogen, vitamin tests for me because while she is "mainstream" she understands the importance of the whole body.

Insist on the vitamin D test. Maybe your PCP can order it for you.  I am taking 5000 IUs a day and  my husband takes 7000 IUs--his levels were even lower than mine.  Our PCPs routinely test for Vitamin D levels. 

Hugs

Mandy

Texas: For me it was easy.  I live in a large city and I googled.  There were three very main-stream integrative doctors---affiliated with major medical centers. In fact one of the major medical centers actually has a "Center for Integrative Medicien".  That was where I started. Even if you can't find someone who specializes in integrative medicine, perhaps you can find a PCP who will be a little more open minded about the whole body connection.  Mine is terrific!

By the way, I forgot to wish all of my sisters who are having testing, good luck with the tests and sending many hugs.

Mandy

Thanks Mandy. I can't believe your oncologist said that about your cholesterol! That sounds like such a "head in the sand" philosophy. I did pay to have my cholesterol tested last fall, and it went up 20 points in one year thanks to Femara.

I like the idea of adding an integrative MD to the mix. 

I live about 50 miles from one of the best medical centers in the country, including MD Anderson Cancer Center. Most of the oncologists around me have trained down there, then started their own practices.  Including the one I'm now using. But he hasn't kept up with the times.

MD Anderson has a thriving integrative oncology area. The problem is that they tell YOU when to show up for an appointment,and you are assigned to a doctor. Typically, appointments run 4-5 hours late! That, combined with the distance, is just very stressful to me. I went there to consult with an opthalmologist about my tear ducts. I was ready to scream by the time we left nearly 6 hours after my scheduled appointment!  And that one appointment was charged to my insurance company at more than $5,000!

Caroline, I know how it feels when you are on a first name basis with all of the technicians.  I reached that point with biopsies when they were diagnosing me.  Got my fingers and toes crossed for good rsults for you.

Texas: MD Anderson has some kind of integrative unit connected with Dr Servan Schrieber--the Servan Schreiber Cohen Anticancer Research Group.  Spend some time on google and do some research about which doctors...then ask for a doctor that you want and just wait for the appointment.  There is no rush for the integartive appointment and if you get it in 6 months or longer, don't worry about it. 

Hello every one! I wish everybody good results!

I,too had my part of scans and blood work. During dec I started having upper back pain on my right shoulder blade. The pain didn't go away so I took a trip to my onc. She sent me to xrays and in 2 hrs I got the results- everything clear. Most likely muscle pain not bone. I am still waiting for blood results and I also had a kidney US follow up. Monday I go for my results.

Anyone still having chemo se? I sometime get the 'hair' pain like I did before my hair came out. The scalp feels on fire and very sensitive at touch. It goes away after a couple of days, but I always get the goosebumps and start pulling my hair out to see if it's not falling. Also, I get extremely tired almost to the point I feel like fainting ( I don't) and cannot function. My doc wants me to change my job as she thinks it is way too much stress for me and too many hrs (12 hrs daily including commute). I think she might be right but it's hard to do that after I worked so hard to be where I am now. But, I also got BC in the process as my onc and my DH thinks it was stress that did it for me. Will see.



Hugs to everybody!

I received my US results and they found 2 ovarian cysts, one mildly complex. My onc said not worry ( sure!!!!!). I have to wait 3 months for the next US to see how it changes. Really? Are these doctors for real? I love my onc but this time I just want a surgeon and get those ovaries out!
I am already chemo menopause induced so why keep them?
I know I am probably panicking and see only bad thinks in front of me, but I don't think I can wait 3 months and be sane at the same time.
Will this fear of c ever go away?

Havehope -- so sorry about the ovarian cysts and the stress that must be causing you.  Sometimes those cysts disappear on their own -- happened to me years ago -- and that may be why your onc wants to wait, but I totally understand why you want the ovaries gone right away!

Texas -- I have numbness in my feet and legs that never went away and also very thin lashes and brows (had brows tatooed last year).  The worst for me now are the joint pains and hot flashes and sweats from the Femara.  It's worth it, but not much fun.

Yesterday I finally got up the courage to go get a prosthetic and pocketed bras and now I'm sorry I waited so long.  The whole experience was great and the form is such an improvement -- it looks very natural. 

My almost 84 year old dad has been in the hospital for a week, recovering from a bad fall and being treated for other age-related problems.  He was scheduled to go to a rehab facility yesterday, but he refused at the last minute and is back at home.  He will have home care until he is able to get around better, but it's not the best situation.  Talk about stressful! 

Had blood work done yesterday to see if my thyroid level is back to where it should be -- I don't think so, but will wait for results.  Also had my cholesterol and Vitamin D checked. 

Anybody else have problems with fatigue on AIs or Tamox?  My body wants to sleep 9-10 hours every night and that is really annoying.

Thank you ladies for the encouraging words.

Cebula, I do have the full report. I made a habit in asking for copies. One cyst is simple and the other one mildly complex (which means is has solids -not too good). My onc took blood for CA 125 and I called my OB and now I am waiting for them to call me back with "instructions". My OB is always booked, so I usually have to wait 6 months to get to him. I hope he will call me back sooner than that. But the more I read about it the more convinced I am to just have the surgery and not worry anymore. The only think that scares me is that if I remove the ovaries my risk of heart attack, stroke and bone fractures increase by 50 % and the prophylactic surgery is recommended  only for high risk of ovarian cancer. 

I should have my CA125 results tomorrow and I will see then.

Hugs and kisses to all divas.  

Havehope, I'm so sorry to hear this latest development.  I'm praying that everything turns out ok for you.  Are you taking Tamoxifen?  Keep us posted on the PET scan results.  Regardless of the scan results, I think I'd be telling that surgeon to just schedule the surgery and get that stuff out!

Wow the challenges just keep coming. Have Hope my prayers are with you.. Thats just crazy that they are talking bone mets before any definitively studies.  I find that emotionally irresponsible of the Dr.

I am going for an MRI on my sternum. As when I e=went for my 6 mo. exam. My surgeon found my sternum to be protruding. I am not worried as it has been doing that for years and I have had a pet scan since it was like that. If there were any problems I feel it would of shown. That's my story and I am sticking with it.

It has been a wonderful winter so far here in sunny CA. We are blessed. I hope the snow and cold breaks in other parts of the country. My thoughts and prayers are with you all.

Thank you all for the kind words.

I have good news and bad news: I don't have mets, but I have ovarian cancer. Of course the final results will come from the biopsy. I am scheduled for surgery on Feb 9, and everything comes out. So far it looks the lymphnodes are not involved.

Stay healthy and take care!

Good news and bad news, yes.  I'm so happy that there are no mets and no lymph involvement.  But more CA!  That really sucks.  You are in my prayers.  

A friend of mine died today.  She was 37 years old and Dx with IBC 3 years ago while she was pregnant with her third child.  Her cancer was so aggressive she started chemo while she was pregnant. BC SUCKS!!!!!!!!