Home Forums All Categories Metastatic Bladder Cancer Any advice appreciated….

  • Any advice appreciated….

    Posted by Mel09 on June 25, 2008 at 9:09 pm

    Hello,

    I am new to this site. My father was just told that he has stage IV bladder cancer that has spread to his bones. He was also told that surgery is no longer an option and that his life expentency is about 15-20 months. This is quite a shock to us simce we just found out that he had cancer a month ago. I am looking for anyone that has defied these odds or has some encouraging stories for me to share with him. He is 65 and not ready to stop fighting. He is beginning chemo on Friday with Gemzar and Cisplatin. We are hopeful that this will bring us a miracle. Please pray for my family.

    Thank you all,

    Melissa

    Mel09 replied 16 years, 7 months ago 9 Members · 22 Replies
  • 22 Replies
  • mel09's avatar

    mel09

    Member
    June 30, 2008 at 11:26 pm

    Thanks so much Leigh!

    We are praying that he remains strong throughout the chemo. We don’t want him to get discouraged. He is feeling a little better today and has been trying to eat and stay as hydrated as he can. Next week is only a 45 min. day so hopefully it will be better. I just pray that his next PET scan will be more positive!

    Thank you for all of your advice and I hope that you are doing well also!!

    Melissa

  • leigh's avatar

    leigh

    Member
    June 30, 2008 at 9:59 pm

    Dear Melissa,

    I just wanted to wish your Dad all the very best with his chemo.

    Having completed a 4 cycle course of gemz/cispl recently I can say thankfully I faired pretty well.

    The cisplatinum was the most difficult regime and the effects remained with me for roughly a week. I experienced tiredness sometimes severely which wiped me out and needed to sleep many hours.

    Luckilly I never had any sickness and my appetite remained and the steroids given alongside the chemo stimulated my appetite and I gained weight because of that.

    Oral hygeine is very important and alongside brushing I used a mouthwash made from salt. The sores remained at bay through the whole treatment.

    The effects are different for everyone and I suppose depend mostly on your state of health at the start of the treatment.

    Melissa, I wish your Dad all the very best in the coming months and hope he fairs well with the chemo….

    Best wishes to you and your family….

    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
  • mel09's avatar

    mel09

    Member
    June 30, 2008 at 1:51 pm

    Thanks so much for your message. My father had the chemo on Friday and is feeling exhausted! He had some bouts of being nauseous but other then that, just extremely tired and weak. We are trying to keep him hydrated and eating as much as possible. We have also switched to soy milk and he is drinking green tea. Don’t know if that will help, but it cant hurt! At this point, we are not leaving him alone because we don’t want him climbing the steps. If exhaustion is the only side effect we will be thankful. Please keep me posted on your father as well!

  • Newbie08's avatar

    Newbie08

    Member
    June 30, 2008 at 12:33 pm

    Hi Mel09,

    Really sorry to hear about your dad, you must all be in such shock at the moment, I really am so sorry! My dad was also diagnoised with BC in May, his cancer diagnosis is different from your dad, my dads is T2 G3 and he will be getting sugery to remove his bladder towards the end of the year!

    The reason I’m replying is that my dad also just started chemo (ciplatin/Gemzar)last thursday (he is scheduled to have 3 months of chemo before operation!!) so just wanted to let you know that we are going through the chemo at the same time and if we have any concerns maybe we could compare notes on how they are getting on! Just know i’m here anyway.

    My thoughts are with you and your family x

  • momof4's avatar

    momof4

    Member
    June 27, 2008 at 2:35 am

    Mel09,

    As far as foods to avoid? I think he should eat whatever he wants, whenever he wants it…I did add licopene tabs (If he eats alot of tomato or red pasta sauce(Jersey Tomatoes are the best by the way) he is getting this), Omega 3 tabs ( If he eats salmon or fatty fish he is getting this), and I do give my husband a high concetrated fruit daily, usually something with pomegrante, but he can’t drink it unless it is mixed with something else…I had to change from a multi vitamen to a flinstone chewable because they got too big to swallow. The key is weight gain at this point…even if it is 10, 20, 30 lbs…he will need this the future…

    Please do consult your Dr. before any of the above. This has been my experience, but everone is different. My husband is only 48.

    Karen


    Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

    Life isn’t about how to survive the storm, but how to dance in the rain.

  • momof4's avatar

    momof4

    Member
    June 26, 2008 at 10:58 pm

    Mel09,

    Well here is were some controversy starts…there are different types of bone “leisons” as they are called…not necessarily tumors per-say. One type is osteoblastic, the other is osteolytic…with osteolytic the bone is actually being eaten away similar to how a termite eats wood…the osteoblastic however does not do this…If his leisons are osteolytic he will need to be mindful of breaks…but not so much with osteoblastic…I actually called in an Orthopedic Oncologist to tell us which he had…you may want to look into some of the drugs used originally used for arthritis…Zometa is one that I know of off hand but there are others, these drugs make the bones stronger…ask his Dr. what his take on these are…be sure he takes a multi-vitamin everyday (make sure the Dr. knows, and it is ALWAYS added to his med list when you are asked for it). There are also Dr.s using Quadramet in conjunction with chemo…some good results there…we would have probably gone for that had we found out about it earlier…

    If you have any other questions, I will be happy to answer them…

    Karen


    Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

    Life isn’t about how to survive the storm, but how to dance in the rain.

  • mel09's avatar

    mel09

    Member
    June 26, 2008 at 9:43 pm

    Thank you everyone for all of your support. You are all in my prayers from now on as well.

    Just another question for Karen in particular. you mentioned that your husband’s cancer is also in the bones. Have you had any experiences with breaks? We are also very worried about that. Also, I have been reading about different foods to avoid…any advice there?

    Thanks again! Your feedback is invaluable!

    Melissa

  • clara's avatar

    clara

    Member
    June 26, 2008 at 6:38 pm

    Melissa,

    Welcome to the web cafe…sounds like it is a place you need to be right now.

    I am another North Carolinean in the same boat….my husband was diagnosed in January 2007. We never talked about how much time he has either. Up until his scan in May 2008 we were getting reports that the cancer was not progressing very much but now things are definitely going downhill.
    It is so very hard to deal with but we just put forth our best effort and are thankful for every day.

    Prayers are for everyone on here.

    Clara


    Caretaker of husband, Bob.
    Stage IV
    Diagnosed Jan, 2007
  • 's avatar

    Guest
    June 26, 2008 at 4:41 pm

    Karen is %100 right about chemo brain I would get confused and for example if I were talking to someone I would answer them and sometimes it was funny because my answer had nothing to do with question and I would swear I was right. Also I was told about WEEK 6 I might lose my hair and that is when it started I would grab some of my hair and it came right out, so I got the clippers out and gave myself a nice buzz haircut. My wife told me she really liked it and said geez lol I never knew you had such a nice round head. It was no big deal when the chemo was over my hair grew back better then before the same color but it was smoother like it was conditioned or something so I can live with that. I was already on Valium but it is a good idea to take something as Karen did mention to put you more at ease. Joe ;)

  • momof4's avatar

    momof4

    Member
    June 26, 2008 at 1:51 pm

    Mel09,

    I also wanted to add that my husband never lost his hair with that combo of chemo…the worst side effect for him was something called “Chemo Brain”…it made him feel disconnected, and he would drift off in his own thoughts…also, nausea so make sure they give him something to go home with…he didn’t really throw-up, but was nausea alot…
    Your father will eat when he is hungry, it is best not to bring up food…I also found that there is not weight loss with this chemo, but sometimes the opposite..and after the first treatment will probably think that this is going to be a breeze…that is a false sense of security because the effects happen usually after the 3-4 treatment…the first 2 are relatively easy…

    Plan something special for a couple of weeks after the treatment ends, a trip to where he always wanted to go, a family get together or something…you must take advantage of this time frame when he is feeling well…I cannot stress this enough…this is a long battle…anti-anxiety drugs aren’t a bad idea either Xanax, Valium etc…they do take the edge off.

    I wish you and your family well, and I will be praying for you,
    Karen


    Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

    Life isn’t about how to survive the storm, but how to dance in the rain.

  • 's avatar

    Guest
    June 26, 2008 at 1:13 pm

    Mel09 I am so sorry to hear this news, it just a question of how he responds to the chemo. You are in my prayers and just try to focus positive. Karen’s husband was dx last year with the same thing and with her loving support and his fight and inner strength he is putting up one heck of a fight. Look at Lance Armstrong thinking his testicular cancer was due to just riding his bike and he ignored all the symptoms until the cancer spread to his abdomen, lungs and brain and he his still here today cancer free so anything is possible. Keep the Faith, Joe

  • julie's avatar

    julie

    Member
    June 26, 2008 at 10:56 am

    Melissa, my husband age 70 in August also has Stage IV Bladder Cancer. His went from bladder to the upper tract and kidneys on both sides. Next a tumor was found in his lungs it was removed in October we found out in May that near the site of the lung tumor cancer had gone into his ribs. He was referred for Radiation Therapy. We have not had a forecast of life expectancy. The oncologist says because my husband bladder cancer has been slow so far that we just don’t know how long. Meanwhile we are waiting and watching. My husband cannot have chemo because he also has a bone marrow disorder and chemo depresses bone marrow function.

    There are some people who live beyond 2 years with Stage IV, some live beyond 5 years and a very few beyond 10. Since most of the people who get bladder cancer are over 60 we don’t know how many died of other causes. My husband has outlived his father who died of a heart attack by 6 years and we count that as a blessing.

    I hope the chemo knocks back your Dad’s cancer. Julie


    Volunteer Coordinator
    ABLSC
  • leigh's avatar

    leigh

    Member
    June 26, 2008 at 8:50 am

    Dear Melissa,

    I just wanted to say welcome to the forum and wish your father all the very best with his first chemo this Friday.

    Gemz/Cispl is far less toxic than other chemo regimes and many people including me had few side effect except tiredness and low blood counts.

    I hope your dad sails through his chemo and has fantastic results…

    Wishing you and your family lots of strength during this time..

    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
  • 's avatar

    Guest
    June 26, 2008 at 2:02 am

    I see your Doctor has great credentials, he studied and had a fellowship from Sloan Kettering, Lets see how he reacts to the chemo, and pray it does its job on the cancer, then who knows about the time element.. Ginger

  • 's avatar

    Guest
    June 26, 2008 at 1:47 am

    Melissa,
    I would be optomistic about the time frame, I cannot say for sure but I know some here have made it longer than previous told by the surgeons. It all depends on how he reacts to the chemo and if it works really well for him. We send many to Sloan Kettering , is it in your area? Just curious. No symtoms is strange, most have blood in the urine and frequent urination. The chemical plant, have they had others come down with bladder cancer? We will put you and your family on our prayer chain, we have so many at this time, you are on the list!!!!! LOTS OF PRAYERS FROM CLEVELAND OHIO Ginger

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