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  • Another Update. Re-TURB cancelled!!!

    Posted by Sonya1 on March 19, 2009 at 11:42 pm

    Well, I got up early to make my way to San Francisco (3 hour drive) for my pre-op labs today and Dr. Konety called me before I left. He was reviewing my path slides and saw lymphatic involvement (angiogenisis) and decided to cancel the re-TURB and order 3 rounds of chemo instead. Then, re-biopsy and discuss further treatment, possible RC in late June. I have an appointment tomorrow for the first time with an oncologist and Dr. Konety will try to reach him before the appointment and tell him his thoughts. This is more in line with my original local uro’s ideas as he made the appointment with the onc. The only thing they disagree on is Konety did not see CIS on the path slide and does not recommend radiation. My uro did see CIS and wanted to do a combo radiation/chemo protocol.

    What do you do when your 2 docs disagree? I am leaning towards chemo only, due to side effects of radiation at this time, but still not 100% sure of what to do. I don’t want to miss any potential benefit of radiation. It is a three month long protocol and Dr. Konety recommends 4 drugs including Gemcitabine and Cisplatin, not sure what the other two are. I will have to take three months off of work. Any one have any thoughts on this? I think after this I will post in the muscle invasive forum because I don’t feel so newly diagnosed right now. :( Thank you!

    Webs replied 15 years, 11 months ago 5 Members · 10 Replies
  • 10 Replies
  • webs's avatar

    webs

    Member
    March 23, 2009 at 6:54 pm

    You will need to take that month between chemo and surgery. It takes a while to build up some energy. They wouldn’t allow me to get my port out till it had been a month and that was a minor surgery. By the way if you are hard to stick for blood draws and infusions get a port installed. it was the best thing i did to get ready for chemo.

    WebsB)

  • mmc's avatar

    mmc

    Member
    March 23, 2009 at 1:09 pm

    Everything on your hydration list looks ok except the Starbucks coffee drinks. Coffee is a diuretic.

    You may also want to add water (best thing there is for hydration) and cranberry juice to the list.
    :)

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • sonya1's avatar

    sonya1

    Member
    March 23, 2009 at 7:00 am

    Thank you so much, that was enormously helpful. I have friends who will drive me when needed and same thing, I am usualy on that end of these type of things, I help others so it is very hard to be the one in need. When it is over, do you think I should take a month to recover before i get surgery? Will they be able to tell if it worked? will the remaining one cm of cancer in my bladder now get killed off? I am going alone to the first session if I feel sick I can call someone to take me home. I am good with drinking the Odwalla products, soy protein shakes and I can make my own. i also like to drink a lot of ice tea, snapple products, starbucks coffee drinks, and fruit juices so I think I can stay hydrated.

  • webs's avatar

    webs

    Member
    March 22, 2009 at 3:23 pm

    I gained weight on this protocal because of the steroids they give you. Hopefully you will experience the same thing. Food did not taste good, but it did not taste bad either just kind of bland. Some foods I couldn’t touch and cooking something I truly enjoy made me nauses. Milkshakes worked well and peanut butter. Room temprature foods tasted the best. Remember to get your protein in every day it is important. They make peanut butter powder that you can add to those shakes.

    As for driving if it’s not to far you can drive for most things. I had to drive myself to most of my appointments. I never drove myself on infusion days though. You need a driver on those days. You will be tired and could have reactions it is safer to have a driver. If you feel really exhausted please don’t drive. At one point I had an appointment and no one could take me. I felt really exhausted and to scared to drive myself and called my husband. He told his work I had an emergency and came home and took me. Turns out my blood count was down to 6.5 and I had to be admitted straight to emergency room and get a blood transfusion. The point is pay attention to what your body is telling you and get help when you need it.

    I believe you said you live alone? Don’t forget to ask friends for help when you need it. I had friends that were happy to drive me to appointments, pick up my kids, cook meals. It felt funny letting them because I am usually helping everyone out. I had to sit back and let them take care of me. I met a women in Chemo who lived alone so her Bunco Team was taking it in turns to get her to all her appointments and things.

    You will be able to do things as long as you take it easy. I am a very active person so slowing down was hard for me. Well until the drugs had totally exhausted me. I took up knitting which is a great stress reliever. You might also find some new activities to keep you busy.

    Hope this was helpful. By the way the first infusion was not as bad as I had feared, but it does hve a cumulative effect keep that in mind when you are planning things. Sorry for all the spelling errors still having brain glitches. Finished chemo in Nov.

    Webs

  • sonya1's avatar

    sonya1

    Member
    March 22, 2009 at 4:51 am

    I was able to meet my new oncologist yesterday and for sure he will be using Gemcitabine and Cisplatin. He will start the chemo on March 30th. I will take 5 months off of work. I will get a permanent port put in but the first doses will be through a pic line. he will give me an anti-nausea med in the line and they will watch me for a few hours to see how I react. He assured me he will do everything he can to get me through it re meds, monitoring blood counts and liver enzymes and keep me hydrated should I not be able to keep food down. He explained how difficult this will be and effects will be felt immediately within the first 24 hours. he also said there are no guarantees with chemo, either it works or it doesn’t. I don’t know if there is an exact way to monitor the lymph nodes, as micromets do not show on a PET/CT. They will biopsy the bladder and see what’s there when it is over after 3 months, but the lymphatics are the real problem. I declined to get radiation on top of this. He said it takes at east a month to recover enough to get the RC. He stressed the importance of keeping positive. I go in next wed to finalize the protocol, he will talk to both uros and get insurance approval. This visit was so overwheming I didn’t take notes but hope to on Weds. I am so sad to stop working and not have something to take my mind off of this for the duration. I hope I am well enough to at least do gardening or home projects. Maybe walking around. I am normaly very active and it will be hard to adjust to a sedentary life. I didn’t ask about driving. I also was recently able to get my weight up to 114 and really can’t afford to lose weight. I hope I am over reacting.:S

    Thanks to all who responded it is very helpful.

  • webs's avatar

    webs

    Member
    March 22, 2009 at 3:16 am

    Hi Sonya,

    I had the exact same thing as Gracie. I was also extremely fatigued throught the course of treatment, but like her it was after my surgery so my body was dealing with a lot. I do know there are others that felt well enough to work part time. It is a very individual process. If you have any questions please let us know we are here for you.

    Webs

  • gracie's avatar

    gracie

    Member
    March 20, 2009 at 6:22 pm

    Hello Sonya,

    I would agree with Pat that bladder sparing is not an option at this point.

    I had adjuvant chemo (meaning after the surgery) of Gemzar/Carboplatin. Carboplatin is in the same family as Cisplatin but is better with the kidneys. Since I have had issues with kidneys in the past they chose to go with the Carboplatin. I also had it over a 3 month period – 3 weeks on/1 week off.

    My oncologist (also @ UCSF) told me that everyone metabolizes the chemo differently. I also had the chemo (3 mos) after the surgery so I was still recovering from that.

    The worse part for me was the absolute fatigue. I would prepare for that. I also encourage you to ask questions about the drugs they give you to offset nausea and the like. Some have steroids and I did not react well to those. I took very little of the drugs and found it to be better for me. Each person is different.

    I personally could not work. No way. Give yourself the time you need. Take it one step at a time and be kind to yourself. Just to prepare, you may want to see if your company also has LTD (Long Term Disability). It may help you financially since it supplements SDI. Its one less worry and something you may not want to deal with later.

    Dr. Konety is an excellent doctor and also a very caring person. You are in good hands – there is no doubt of that.

    Gracie

  • 's avatar

    Guest
    March 20, 2009 at 5:59 pm

    Sonja….they have some pretty sophisticated equipment at UCSF pathology and i would tend to think Dr. Konety is trying to nip this aggressive activity in the bud……..
    http://www.ncbi.nlm.nih.gov/pubmed/7539869
    As far as the chemo goes there are others who can help you a bit more with that and its a variable you know. The important thing is that you know exactly what you are getting and when and question everything. Know the protocal backwards and forwards. Hopefully you have a center near you that can follow Dr. Konety’s protocol.
    I can only tell you about my sons experience with testicular cancer..He went to the top docs at Indiana that came up with the cure for this cancer but he was able to do his chemo here at home but his doctor made sure he knew everything he was getting and was told to question every nurse that came in as to what he was being given and of course, if there were any problems he would go back to Indiana. He always had someone with him during infusions and to bring him home. There was one time that a nurse came in with a bag and he asked her what it was and she told him and he said…”NO.that is not what i get”..She was insistent…as was he…finally she went out to check and realized she had gone into the wrong room. Nurses get tired..mistakes can happen….they shouldn’t but they do…..so remain a strong advocate for yourself.
    Pat

  • sonya1's avatar

    sonya1

    Member
    March 20, 2009 at 6:50 am

    Thanks Pat. Is angiogenesis a rule out for bladder sparing? I thought it was CIS. Would the chemo kill what is in the lymph nodes? Nothing showed up on the PET CT outside the bladder so what’s in the nodes is microscopic at this point. I also have 1 cm of cancer left in the bladder. Dr Konety felt the chemo would kill that. Do you have a sense of how sick this chemo will make me? I’ll have a better idea tomorrow what the drugs are when I talk to the onc.

  • 's avatar

    Guest
    March 20, 2009 at 3:45 am

    Sonja…..i would personally lean toward the pathology department of UCSF and their findings. Since they have found tumor angiogenesis thats a pretty good accessment that lymph nodes are involved and you need to start chemo as soon as possible. I would be interested in the 2 other drugs he is including with the Gemzar/Cisplatin.
    The bladder sparing protocol is not an option at this point.
    Pat

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