Update on Nancy

We have some good news and some bad news re Nancy's cancer treatment:

Ocala Oncology & Dr Cartwright, who were highly recommended to us, did nothing for the past three weeks and ignored our requests to get started on the preliminary tests that our research indicated were standard in this type of cancer. After consultation with the Moffitt Cancer Research Center (University of South Florida, Tampa) and our GP, both of whom were shocked at the delay in treatment, we decided to fire the local outfit and go straight to the Moffitt for treatment. The staff at Moffitt demonstrated to us their deep concern for the patient and their credentials and facility are outstanding. It's a two hour drive to Tampa but we think it is going to be worth it.


The Good: We spent much of Friday at the Moffitt Cancer Center and finally have a program of treatment!  Those good folks understand the urgency of the situation and got right to it!  She will get two chemo drugs (Taxotere & Carboplatin) plus an antibody called Herceptin that is specific to the type of cancer she has. It's a recent drug, about two years old, that is keyed to the marker gene her cancer carries and attacks it directly. It has a nearly 99% success rate, which is double any previous treatment for this type.  She will get 6 treatments, 1 treatment every 3 weeks for 18 weeks. Will start next Friday if we can get all the preliminaries done in time. She got a couple tests done last Friday and we go back to Moffitt on Monday and again on Thursday to do further prep work and if all the prelims go ok she can start the chemo on Friday. Friends in Tampa (the salesman we bought our coach from) have offered us the use of their house when we need to stay over night for treatments.



The Bad: In the three weeks while the local oncologist kept us waiting for an appointment, a second tumor developed in the breast and the surface "rash" that indicates cancer in the lymph glands more than doubled in size. If only we had fired him sooner and gone straight to the Moffitt, Nancy would already be getting chemo and it would not have spread as far. The local doc, Dr Cartwright, is supposed to be a hot shot in central Florida cancer circles, but as far as I'm concerned he is lousy quack.

Sorry to hear of the troubles - good luck and best wishes to you and Nancy!

Mike and Sherrie

Gary; We are happy to hear that you got the treatment schedule moved up & it is particularly exciting to know that they have had such a high success rate.  There is light at the end of the tunnel.  You guys keep your dobbers up!

Sorry to hear about the rough start, hopefully the new treatment will result in a great outcome for all. We'll keep you in our prayers.

Dale & Karen

Great to hear that things are finally moving forward. Our prayers are with you guys always.

Jeanette got her appointment at MD Anderson for Monday the 23 and we are going to Houston today.

Dave & Jeanette

Being a cancer survivor myself I have found out that "local" isn't always the best.  I too drive 2 hours away for the best treatment as it has been 10 years since my treatments and I am now cancer free.  They too have the same attitude as Moffitt.  Take care of the patient and their concerns.  Getting help and treatments for cancer is nothing to drag you feet about.  Yes, it does take time to do tests and get results back but you have to get the ball rolling ASAP.  Sorry to hear the bad news but you are headed in the right direction now.  My Dad and my husband are also survivors and they too went 2 hours away for their treatments.  Thoughts and prayers for the both of you.

Very best wishes to you both. Glad you've found a positive path. Hopefully you will take a minute to drop a note about the local docs to the state medical board, which may help other patients as well.

Gary and Nancy, our prayers will continue.

Best wishes for a fast recovery, think positive.

Gary,

I'm so glad you took the initiative and prodded things along in such a positive way.  It just proves once again how proactive we, as patients, must be.  In our parents' era you never questioned what the doctor said or did.  Thankfully that has changed.  We must go where we'll get the best care so the drive to Tampa is worth it.  Please do give Nancy a big hug for me.

Loads of good wishes from here to there!

ArdraF

Sorry to hear of the incompetent doctor delaying the treatment.  Glad you recognized the situation and took it upon your own to seek out good treatment.  Our thoughts, hopes, and prayers wre with you and Nancy.  Thanks for the update.

Thank heavens you had the guts to force things along.  Our thoughts and prayers are with both of you daily during this fight.  I'm confident you will succeed in keeping  the medical people on their toes.  Our hugs to you both.

I was so fortunate to have been workamping in Iowa when I was diagnosed.  Dr. Russ Mahoney's former colleagues at Iowa Methodist Hospital and the John Stoddard Cancer Center treated me with extrordinary care and dispatch.  Without Russ' friendship and recommendations,  I would have felt very much adrift in a strange land.  In times like these you really learn that the RV Forum "Framily" is much more than just lip service and a cute name.  I hate to use the trite phrase "let us know if we can help",  when we're in Oregon and you're a continent away in Florida, but please ..... let us know if we can do anything at all to help ease you and Nancy through this struggle.

Margi

Thanks, everybody. Finally getting some forward motion is a great relief to us, as is the existence of the Herceptin treatment, despite the other bad news.

Yes, I made a complaint to the parent company of Ocala Oncology (US Oncology) but hadn't thought about the state medical board. Will look into that.  Their excuse is that the doctor is very much in demand and that we could have seen another doctor sooner. But they didn't offer us any alternatives or advise us that any delay could be life threatening. They also refused our attempts to get the prelims started earlier. My guess is that the doc had not even reviewed her records until we advised them in writing that we were firing them for cause.

Ardra is right  - you have to be proactive. You simply cannot rely on the medical fraternity to always be focused on getting you the best available care.

I am dismayed at what has happened.

Best wishes for speedy treatment.

Nancy and Gary --

Thanks for the update.  Glad to hear that you are being proactive!  Our experiences with our daughter-in-law's leukemia and my bladder cancer (both of us currently "clean"; her "cured")  are that you will need to keep track of everything and push for what you believe to be right......as you've discovered, you cannot rely on the medical profession to do the best thing for you.  Even the best intentioned docs and nurses can get overwhelmed by the workload and the mass of information and details of the treatment of ALL of their patients -- you two only need to be concerned with Nancy's treatment, so speak up.

Glad to hear that you have found the right place and a treatment plan is in place.

You both are in  our prayers.

Don and Mary Ann

Thanks for the update Gary, but sorry to hear of your poor response from the doctor.

I was fortunate to have a very slow growing cancer in 2000 which gave me time to research the problem.  As you know, I went to Atlanta for treatment because they had the best treatment statistics.  It paid off.  It was my decision and I wasn't going to settle for anything less than the best.

Tell Nancy we are keeping her in our thoughts.

All I can say Gary is that Joanne and I will keep both Nancy and you in our thoughts and prayers.  Sounds like you two are taking the cancer head on are not taking "no" or "slow motion" for an answer.

It is our style to educate ourselves so  that we know enough to ask questions and understand the answers, at least well enough to have a good chance of detecting BS.  We got antsy when neither the oncologist nor his office staff would talk to us or explain anything. Once we got confirmation form other medical professionals that the 3 week delay was seriously harmful, we started making other arrangements. That didn't eliminate the delay - it was too late for that, but we now have a doctor and organization that is both actively helping us and extremely patient friendly. They have busted their collective hump to get her started on treatment ASAP.  We get detailed explanations of every test and procedure before hand, including one written in laymans terms to review at our leisure, and plenty of time to ask questions. Nobody rushes us to do things we don't understand and counselors are available at all times if desired for moral support or just a good cry. Heck, they even have free valet parking so you don't have that hassle to deal with.

We told her surgeon up front that we were willing to go anywhere in the country for the best medical treatment and mentioned the Moffitt as one possibility, but he said  "Cartwright is affiliated with the Moffitt and has access to all their procedures and techniques" and "this guy is good and I would use him for myself if needed". Tough to beat a recommendation like that! But I suspect that he would have got quicker attention from a fellow doctor too. We will see the referring surgeon Tuesday - he is installing an IV port so she can get her chemo and nuclear medicine testing done without becoming a pin cushion - and I will see what he has to say about this lapse by the guy he recommended.  By the way, the surgeon is a proactive guy too - he rearranged his surgery schedule so he can get the IV port installed in time for her first session.

[Sigh] Wish this was easier! Nancy & I thank all of you for your support and for allowing us to share our burden with you. Just like real family!  8)

Gary,

Our prayers are with you and Nancy in this trying time.  It sounds like you're in command of the situations and doing all you can do.

Good Luck

Nancy and Gary,  So sorry to hear about your treatment delay, but sounds like things will now go forward in an expeditious manner.  However, I am amazed at the technology that has come along in the last 25 years that is now available.  I have a long list of cancer NON-survivors in my family history, nothing like pin-pointing the gene of that particular cancer, etc. for them... or good chemical treatments for them.  I can only hope a couple of them were "case studies" for the rest of us.  Any way, Fred and I wish you a speedy recovery and hope no more glitches come your way. 

Daisy and Fred