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Looking for That Thank You Note

Nov 02, 2009 - 7 comments

Hello to all of you wonderful ladies here on Medhelp.  I’m sorry I haven’t been as active lately but wanted to update ya’ll on what’s been going on.  I’ve been doing a clinical Phase I/II trial at MD Anderson of Perifosone/Taxotere since late June after the original standard of Taxol/Carbo didn’t work nor a trial phase II trial for Doxil/EC145.

I started this trial end of June  and went back to Houston the end of September to meet with Dr. Kamat, get my blood work done and then get approval for early morning chemo on the next day. This would have been my 3rd treatment.  The trial calls for 21 days of oral Perifosone, off one week with taxotere every 4 weeks. I had been having stomach pains for the last few weeks, and self diagnosed myself as having an incisional hernia right at my belly button.  Well, yeah, I’ve got a hernia there.  It was  mentioned in my last ct report 4 weeks before but no one mentioned anything about it but now it came out???? Whatever....everyone was all concerned at the exam...They all clucked and asked me questions about how it felt etc..I finally said,,Hey do you wanna see it?????  After the pushing and prodding,  Dr. Kamat ordered ANOTHER CT scan saying she wanted to make sure it didn’t involve the bowel and that cancer wasn’t involved.  I was ticked off about this…too many scans here.  I was  scheduled for another scan in 4 weeks, had just had a scan 4 weeks before and I wasn’t having problems “going”.  I just wanted to get the chemo and get outta Dodge…I promised to have Dr. Teneriello here in Austin look at the hernia thing and get it taken care of.  But Dr. Kamat would not sign off on my chemo without another scan.  So I had a scan the next night and got a call from Dr. Kamat Friday morning saying that there was tumor progression and a new tumor as well right at my hernia, I was no longer eligible for the trial, no chemo and, by the way, she was leaving MDA and would no longer be my doctor.  I was stunned,,,too much information.  Oh yeah, my hernia did not show any obstruction but needed to be taken care of pretty soon.  She wanted to do the surgery.  I told her that I would rather have the surgery in my hometown and would have my gyn/Onc there look at it.

So I flew home and saw Dr. T. here in Austin the following Thursday and guess what? He did not think that I NEEDED to repair the incisional hernia. He said in his typical way, “I thought from your report that it would be much worse than this….I see at least one hernia a day and this is not that bad.” My hernia is right at my belly button. He said he was ready to do surgery next week but after looking at it,,,,nahhh. Suck it up. Shake it off….don’t be such a baby. There is no intestine involved but there is tumor there (this is new).  He was much more concerned about that.

Well we were on the same page of wanting to start on some chemo asap. If I did the surgery, it would be 4 to 6 weeks before I could start another chemo regimen. He suggested either topotecan, etopiside or a combination of avastin and cytoxan. I have looked at all of these and was leaning toward avastin and something so that’s what we did starting the following Tuesday. The cycle is 21 days of oral cytoxan, 7 days off and avastin once every 2 weeks.  

Meanwhile, I was still trying to see what Dr. Kamat at MDA would suggest for next chemo…finally got an e-mail from her suggesting “Doxil, topotecan, or cytoxan and avastin….I’d recommend doxil next” What? Guess she didn’t bother to look at my file and forgot I’ve already had doxil..???  I feel really abandoned by MDA.

Okay ya’ll,  so I’m still looking in my mailbox for that Thank You Note from MD Anderson….you know, the one thanking me for participating in the trial where they did TWO needle biopsies and TWO one hour each MRI’s where I was stuck in a tiny tube trying to overcome the claustrophobia and breathe.  These tests did not benefit me at all,,,it was all for research.  This trial was the one that gave me explosive (sorry) diarrhea for 3 months, butt sores, nausea, fatigue and vomiting.  I’ve been waiting for that “thanks for your sacrifice and participation” note.  But I’m beginning to feel it’s not forthcoming.  My mom pointed out that they should at least send me a note after they dropped me like a hot rock when progression was found on the ct scan.  My mom is the quintessential Southern Lady,,,a thank you note is always in order for the slightest thing.  I did think they would at least call me and ask what I was proceeding with as far as my treatment.  But no, not a peep from them.  I would like to think that some of this gap in etiquette is because my doctor there is leaving but gheese guys…don’t I deserve at least a “how’s it going?”?  Yeah, I really do feel like a lab rat that did not perform up to their expectations.  I at least, expected them to give me some direction as what to do next.

So I’m going on without the brainiac assistance from MDA.  Don’t want to burn any bridges there…they may have something down the line for me…who knows?

On the up side, I’m feeling so much better on this new chemo compared to the last.  Friday night my husband and I went to dinner before attending my daughter’s choir concert.  I was able to actually pick anything off the menu without thinking about what I was eating…and what it would taste like two hours later.  I had forgotten what it was like to enjoy food without any reservations.  Saturday afternoon my daughter, Maggie, and I went to the mall.  I felt good enough that I enjoyed looking at clothes and wasn’t counting the minutes to get outta there.  I had a bit of a bounce of a step and some energy for the first time in months.  We had a late lunch/early dinner went to Forever 21 and Norstrom  I pointed out my previously purchased plaid black and white converses at Forever 21 displayed everywhere and commented on how cool I was to already have them…Maggie just asked me to state the NAME of the STORE (Forever 21)...HELLO!  You’re too old for something displayed there.!  Oh well, I felt GOOD and was HAPPY to joke with her.  What a difference a chemo makes!  Life is Good!

I’ve been on this chemo now for one full cycle and so far it’s been a walk in the park compared to the trial I was on at MD Anderson.  Now if it just works….that’s the true test.  Starting my 2nd cycle on Tuesday with Avastin IV and beginning the daily cytoxan again.

Sorry for the long entry.....but you that know me know how windy I am.

Hugs to all.

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523728 tn?1264621521
by bohan54, Nov 02, 2009
I am just relieved to here from you.  Your wind is a breath of fresh air to me.
Love ya,

Avatar universal
by shewrites, Nov 02, 2009
Glad to see you're back on the board.  I guess even the vaunted MD Anderson is just a place where flawed humans work, huh?   I have no connection with the place, but on their behalf, if you'll let me, thank you for participating in the trial.  

Has your local doctor seen the recent scans?  Does s/he agree there has been tumor progression?  Maybe they got that wrong, too.

Sounds like your life has improved without the trial.  That's worth a lot.  Hang in there


Avatar universal
by choo_choo, Nov 02, 2009
It takes a special person to do what you did...medicine wouldn't advance if there weren't people like you.  I'm sorry that MD Anderson treated you the way he did.  He, of all people, should understand the value of your participation in the trial.  I hope all further treatment brings you a great life!

Good Luck.

801514 tn?1273676786
by MinnieWM, Nov 24, 2009
I'm so glad you're feeling better, and getting to enjoy eating out and shopping again.  There have been so many positive reports about Avastin.  

Also, keep A6 on your radar.  They're in Phase II right now, and my doctor said there had been preliminary good results for recurrent/resistant OVCA.  

Have a wonderful Thanksgiving . .  Minnie

P.S.  I'd be put out with MD Anderson also.  Your mother is right.

Avatar universal
by Katie116, Nov 24, 2009
Your story sounds so like my DIL's @ MDA. They basically brushed her off. MDA declared her inoperable (Dr. T. did not & recommended her to Mayo), and when she asked how long she might have, he replied, "Not long." What a jerk. He was going to have her do 2 more chemos, and that was it. Good for you. I'm so glad you have a bounce in your step again and can laugh & joke - and eat! Just in time for Thanksgiving.  K

349465 tn?1289081764
by Teresa222, Nov 24, 2009
I've been wondering how you were doing lately. This Journal Entry popped out of nowhere for me to read.  I think you just talked me out of considering MD Anderson in the future. We'll see what happens.

I hope and pray this combination gives you a remission and a very long one at that!  You deserve a big break. I wonder why your Clear Cell is being so obstinate? Did you have tests done on the tumor? I can't remember it's been so long.
Teresa One

684804 tn?1259362501
by Tealoak, Nov 24, 2009
One of the things I hate about this Journey is that so much of our success ( or what feels like success) is dependent on which Doctors we deal with.  Doicat & I have been following an almost identical journey with surgery a day apart; both delivering 9 pound tumors; I was stage 4 clear cell., she is 3c clear cell.  My surgeon from MD Anderson obtained optimal debulking when many other surgeons would not have attempted surgery.  I switched to a different Gyn-Onc as he was going to be unavailable during the time I really needed to start chemo.  My new Gyn-Onc is also fabulous.  I had disease progression on first line chemo.  She felt that single agent cytotoxic protocol would not give me good results and wanted me on targeted therapy.  I went over to the Clinical Center for Target Research ( phase 1 trials) who tested my tumor for various mutations and then put me on a trial based on the findings.  My tumors decreased over 46% before the side effects kicked my *** enough that I had to take a break.

During this time my Gyn-Onc and NP continued to email me to check up on how I was doing;  kept up with test results and after a month break from chemo have put me on a different protocol while I heal.  My Gyn-Onc and NP sit down together with me and discuss options, strengths and weaknesses of each and make me feel like a true part of the team.  I know that they will do everything possible for me while keeping my quality of life in mind given it likely I will never achieve remission and will be on chemo for the rest of my life.  I will admit that my Dr just won a huge award for patient care beating out 59 other nominees at MDACC...and she deserves it.  Heck, I even go out to dinner with my NP, an Oncology Nurse about once a month....we are eating our way around Houston.

I was disappointed for Doicat's and her experience once it became clear her Doctor was leaving.  

I feel I won the Lottery with my Dr and NP....they are truly the silver lining in this mess and I am so grateful.


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