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Quick update
Hi Guys
Haven’t posted for a while. I have been reading posts, but been feeling a bit down. Hope you are all doing good and overcoming the various difficulties I have read about recently.
I met with an Oncologist Jan 3, he is great. Also have a fantastic oncology nurse coordinator. Just been referred to a ‘ look good feel good program ‘ In anticipation of hair loss!!! Best to get ready in advance!!!
Due to the time lapse from dx I have spent most of the week having various tests done.
Tomorrow I am having a medi port insertion and starting chemo approx one week after.
I was a bit paranoid when having the bone scan done today as it seemed to go on forever and they did repeated pictures of chest and pelvis ………… I have been having a lot of pelvic bone pain recently.
Sadly can’t have MRI done due to past medical history, maybe some hope to get this done. My husband contacted the medical records dept in the UK who after 18 years still have my file. They are clearing issues with a surgeon and will let me know tomorrow for sure. If can’t get it done will have another CT scan.Still have not found a surgeon ……… finally my insurance company have intervened and are actively looking for a surgeon for me. Surprisingly they have been extremely helpful during the past few weeks. My insurance has been continually refused by most hospitals for the surgery, they are trying to correct this issue!
I am pleased treatment is finally starting, but scared at the same time, if that makes sense.
Melodie, thank you for your continued support.
Pat all the surgeons suggested refused ins. It will be interesting to see what help the insurance company cancome up, they are giving me a few options (if they can find any)to choose from!Take care you guys and hope to have some more good news soon.
Maria xx
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5 Replies
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Maria,
My experience was that the doctor/nurses did not want me to drive in the beginning stages of chemo…they like to see how you are affected by the drugs, so my spouse took me to the first few sessions…after that I was able to drive myself without any problem…I never got sick during the process or even later that day, it was always the next morning or afternoon. OF course everyone is different and it depends on the drug combo…I had MVAC as I said earlier. I am hoping whatever they give you doesn’t kick your butt or have you leaning over the toilet…after my first few sessions with vomiting, I called and they gave me some meds for nausea. I think you will be fine. So glad to hear the insurance company is lending support to your cause…and that is it, money talks…where the individual is only one, the insurance company represents billions of dollors so someone listens. Hang in there. :) Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
Had a Power Port insertion on Friday, all went ok, anybody have one of these specific type of ports?
Just found out last week that my INS co have an office in PA
They have been great, done so much to help in such a short time. Possible appointment with surgeon at Shands, Gainsville within the next 10 days. Has anybody been to the Shands Center for RC?Cleveland Clinic in Fl can’t offer any appts for second opinion until 2/25. Ins co trying to change date. Seems they refused when I asked for appointment but did not refuse my insurance co as they have accounts with them!!
Waiting for follow up with Oncologist with test results and date to start chemo.
Don’t know how well I will be able to travel for second opinion appts after chemo started, Shands is only 2 hours drive. Cleveland 4 hours drive. Ins are investigating a few other options for me.
Progress is good!!!!
Dear Maria,
Great to hear that you have a good oncology doctor and coordinator.
Good luck with the port insertion and of course for the chemo treatment you will receive next week.
My adjuvant chemo starts on Tuesday and the unknown is what is making me on edge lately. I have read of other peoples experiences with chemo and they are all different. I guess all we can do is try to stay positive and listen to our bodies well over the coming months.
I have been told my hair will also fall out or thin although for a man it is different I guess. I can sport the bald look as it is kinda trendy in europe at the moment, just hope I keep my eye brows. For a lady I can imagine it to be much harder but I am sure you will manage just fine.
Confrontation of the cancer will be harder for me I think…the scar from the RC was the first although easy to cover up and to be honest does not bother me anymore. Looking in a mirror later when my hair falls out and seeing the side effects of the treatment take hold will be hard. It will also be on public view of course when I pluck up the courage to venture out sporting the new look :)
I am totally with you on the paranoid point of view regarding scans….I too thought they hovered a long time as they repeated the scan recently for a brain scan. Then the wait for the results…..luckily and thankfully with nothing found, I wish this for you also.
I wish also that a fantastic surgeon will be found very soon so that you can concentrate your energy to the chemo treatment and have one less worry.
Take good care of yourself.
Leigh
Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum
Maria,
Sorry to hear you are having pelvic discomfort…hopefully that will let up. You are smart to get prepared for the changes that chemo may bring. It is scarey but less so when you know what side effects are coming. I am anxious to hear if they give you MVAC as that is what I had…three months of it. When I had my portacath put in, had a good doctor and it was easy, altho. afterwards I was a bit sore in that area for several days…since I am boney in that area, mine really sticks out and so it took me about 2 weeks to get used to it. Now I seldom notice it.The actual chemo treatment given to me by the nurses was painless…and I never got sick until hours later at home. Although I think most chemo centers provide liquids and snacks, I would recommend you bring with you your favorite beverage. It is very important to stay well hydrated while receiving chemo and during that entire process to avoid possible damage to the kidneys. Most everyone gets sick to some degree but the doctor and nurses should be able to keep that under control with meds. You want to be certain to tell them if you are vomiting because they don’t want that happening and will do what they can to correct that problem. I was only sick like that a few times the first two weeks and then all was under control.
It did seem, however, that for weeks I was low on energy, sometimes exhausted so get plenty of rest. I’m sure you will do fine. Let me know. Take care, Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. WrightWell i’m glad that your oncologist is accepting your medical insurance and that you are getting started. I’m kind of dumbfounded that the 3 top surgeons and institutions that do this surgery have refused your insurance..that being Moffitt, Cleveland Clinic, and the U. of Miami……i hope your insurance company can intervene. Keep us posted. Pat
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