Hi all....I haven't been on in a while. Too much going on here with this clinical trial, phone calls back and forth. My mind is about to explode! Dennis was suppose to start clinical trial this past Monday. Last Thursday we got a call saying he did not qualify because his heart was pumping 40% instead of 50%. They did not want to take a chance on him having a heart attack. The doctor said she had another clinical trial drug she'd like him to participate in but it would take another 3-4 weeks before she could get him in. I told her we can't wait. He needs to be on some kind of treatment. So back to the original oncologist we went. He put Dennis on Taxotere on Thursday. On Friday he had an injection of Neulesta. On Saturday I took him into ER. He was shaking like a fish, fever of 101.9, tightening in the chest, constipation and vomiting. They admitted him on IV anti-biotics. They did xrays, and blood cultures and everything came back negative for infections. I had the doctor order a mug-a-scan of the heart to see if it's still pumping only 40%. We don't have those results yet. They discharged Dennis on Tuesday. He's feeling better. I am thinking that this was all a reaction to either taxotere(doctor doesn't think so), or to the neulesta(never effected him before). He goes for taxotere again on 7-16. I will know more then. If the taxotere is not doing any good he will then use radiation on the cancer in his neck(3 lumps now) and then directly inject radiation into his liver. Needless to say, I'm a mess and Dennis is even more of a mess. We need prayers, lots of prayers.
Mary
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Update on Clinical Trial
- By luvcntrym
- Posted July 2, 2009 at 6:49 pm · 21 replies
- In Metastatic bladder cancer
- Shared with the public
Explore topics in this discussion:
Cancer Surgery Alli Chemotherapy Carcinoma in situ Carboplatin Paclitaxel Targeted therapy Taxol Cipro Fever Taxotere Constipation Pain Heart attack Methotrexate Bladder cancer
21 replies
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- Newest first
- By simpleone
- Posted July 2, 2009 at 7:10 pm
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You and Dennis will be our families prays and thoughts as you face these difficult times.
- By Cheyenne
- Posted July 2, 2009 at 7:45 pm
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Gosh, well, I know what a MUGA (Multiple Gated Acquisition Scan) is and I am not a medical doctor but I suspect that if he has only 40% heart output capacity any little thing could be a major problem, such as an infection, low hemoglobin, etc. But I am sure the oncologists check all this before hand. Frankly, if it were me I would be hesitant to start on any clinical trial until I know the pumping capacity was sufficiency. I sure can understand your urgency to start a treatment regimen, but I would agree that his heart needs to be of sufficient pumping capacity. This is a case I think that you need to leave in the hands of oncologists. If you have a good and trusting relationship with them I would follow their recommendations, as difficult as that may be. I think you definitely did the right thing by asking for another MUGA though. Hopefully you will get the results soon and something be be initiated. This is a very real and very unfortunate situation and I wish both you and your husband well. At some point though you will need to place your trust in his medical team so do the best you can to get the best doctors. I sure wish there were some easier solution to this. But please keep up informed, ask questioned or just present your concerns to us. Most importantly, don;t give up. There are work arounds for everything. Please keep us informed.
- By luvcntrym
- Posted July 2, 2009 at 7:51 pm
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Thanks for your thoughts. The oncologist that Dennis is seeing is the one he's been with since 2006. Everyone says he is brilliant. Even the urologist who did the RC said he refers his own family members to him. Dennis likes him. I just hope he's brilliant enough to come up with something that works. I'll update with more after 7-16. Thanks again.
- By lsh
- Posted July 2, 2009 at 8:05 pm
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We will be lifting your family in prayer during this difficult time as you await "the plan" that ya'll are going to go with. Please keep us updated.
Lynda
- By Cheyenne
- Posted July 2, 2009 at 9:20 pm
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Sounds like Dennis and many others trust him and that he is well respected in the medical community. Sometimes we have to relinquish our fears and concerns to the doctors we trust. Based on this trust I would say stay with him and let him take care of it. Some things we have little or no control over. Try to be at peace. This will put less strain on your minds and your bodies, and that is very important. Concentrate on getting Dennis well. Look at what you have and not at what you do not have. Look at what can go well, not at what can go wrong. You and Dennis have no doubt shared many things, good and bad, this is yet another one for you to share. And God willing it will have a very happy outcome. Both of you are in my prayers.
- By CandyB
- Posted July 2, 2009 at 11:32 pm
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You continue to be in my prayers.
For whatever it is worth, there is an interesting story called Bladder Cancer, No Longer a Death Sentence, in a recent journal on rehabilitation. It talks about a treatment called SPTD. It may be quackery, or not, but it is a good read. You can access it by typing "bladder cancer news" into Google.
Again, have faith.
Candy
- By Ciboney1
- Posted July 2, 2009 at 11:51 pm
- Report post
Sorry to hear about your difficulties with Dennis' heart. As Cheyenne put it; you have to find a doctor you trust and take their advise. I know you want what is best for Dennis; so you really have to have that trust and let them help you make decisions which are the best for the situations you are currently in.
Take care and you are certailnly in my thoughts and prayers for a positive turn for Dennis.
Arlene
- By Leslie45
- Posted July 3, 2009 at 2:10 am
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Mary,
Cheyenne could not have said it any better. I will be keeping both of you in my prayers and please keep us posted.
Leslie
- By georgiaE
- Posted July 3, 2009 at 7:12 am
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Hi Mary,
So sorry to hear about your husband and everything you both are going through. My husband Ed just had his RC on the 18th, followed by some problems also. The path report found a blockage in his left ureter, which was removed. It had carcinoma in situ there. Also the surgeon said that a cell had been DROPPED last summer during Ed's partial at one of the top cancer hospitals in the country. It is in situ on the left of Ed's large bowel. We meet on the 14th of July with Ed's oncologist to discuss a new plan of attack all over again. Ed had chemo before surgery. His was considered a met. We will fight like hell to keep him here on this earth and pray a lot. We will pray for your husband too. My husband had reactions from chemo before his surgery, I can't imagine having more chemo now, this soon afterwards with complications! Know that you have this wonderful site, with wonderful, caring, good people here that feel your pain!
Love,
Candon
- By silgal
- Posted July 3, 2009 at 8:47 am
- Report post
sending good thoughts and you are in my prayers.
- By jj803
- Posted July 3, 2009 at 10:35 am
- Report post
Hi Mary,
I'm sorry to hear that Dennis didn't qualify for the trial. I don't know of the side effects of the drugs you mention, but I am glad that there was no bacterial infection and that he feels better. You both continue to be in my prayers.
JJ
- By mfenn1957
- Posted July 3, 2009 at 3:42 pm
- Report post
Mary:
I am glad Dennis is getting treatment. I hope that Dennis will do as well with Taxol as Dave has. I asked Dave's oncologist about clinical trails for angio-genesis inhibitors like Stutent & Pazopanib. He told us that they did not work well for metastatic bladder cancer.
Dave has never had Neulesta, but serious Taxol side effects usually show within minutes of administration, which is why they have a nurse stay with all patients for 5-10 minutes once treatment has started. I would be glad to help in any way I can.
Michelle
Michelle
- By baudine
- Posted July 3, 2009 at 5:11 pm
- Report post
Mary,
Tom and I are so sorry to hear this last news. Our positive thoughts and wishes are with you. I will never forget the message you posted for me when I was so worried about Tom and when you and Dennis were going through such a nightmare. You are very special.
Sandra
- By luvcntrym
- Posted July 3, 2009 at 8:01 pm
- Report post
Thank everyone for all the support, kind words, powerful words(cheyenne), and all the prayers. Michelle....Does Dave feel any side effects from taxotere? I think the reason Dennis ended up in the hospital was because of taxotere. From what I read about the side effects, he had almost every one of them. We're going to the doctors on Wednesday as a followup and to get the results of the MUGA, i'll find out more then.
Sandra.....Thank you for your kind thoughts. You are very special too. Everyone here, who is battling this ugly thing are the special ones. You all have a good outlook on this. I try to, but it is just so hard.
Cheyenne.....I am taking your advice. I am looking at the good and not the bad, what could be and not what can't be. Thanks!!
Candon.....You and Ed are in my prayers too! I pray that he does well.
Everyone......Thank you so much. It means so much to me to know that people that I have never met and don't know are so kind and supportive. My prayers are with all of you.
Mary
- By mfenn1957
- Posted July 4, 2009 at 7:56 pm
- Report post
Taxol causes fatigue, change in taste of foods, long term it causes neuopathy (some loss of feeling in his feet). Each treatment now results in a UTI, so Dave takes Cipro prior to each treatment. Of course hair loss, and it kills RBC but that is to be expected. In balance the side effects are tolerable.
Michelle
- By balihigh
- Posted July 4, 2009 at 8:00 pm
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I am sending my love and prayers from NC.
Hugs,
Nancy
- By Encarnacion
- Posted July 12, 2009 at 3:15 pm
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I really know what you're going through and it's so scary but never give up and I hope and pray that things will work for you. My mom just had her 1st treatment and we're in the hospital for 11 days so they are already changing treatment. I had these links that I have no idea if they will help you so please always check with your doctor- I am myself starting to research trials so i will be prepared. And Candy, I love you, I feel the same way and I'm tired of being looked at as if this is the end for her before we barely even started.
Belowis also an article i read that sounded interesting and not all are active trials. Sorry it's so long. this is what i do while my mom sleeps-
http://www.mskcc.org/mskcc/html/2270.cfm?IRBNO=08-123
http://www.cancer.gov/search/ResultsClinicalTrials.aspx?protocolsearchid=63 94031
http://cancer.wkhs.com/cancernews.aspx?section=cancernews&id=40148
copied from University of Florida Shands Cancer Center website
Strategies to Improve Treatment
The progress that has been made in the treatment of bladder cancer has resulted from improved treatments evaluated in clinical trials. Future progress in the treatment of bladder cancer will result from continued participation in appropriate studies. Currently, there are several areas of active exploration aimed at improving the treatment of bladder cancer.
Supportive Care: Supportive care refers to treatments designed to prevent and control the side effects of cancer and its treatment. Side effects not only cause patients discomfort, but also may prevent the optimal delivery of therapy at its planned dose and schedule. In order to achieve optimal outcomes from treatment and improve quality of life, it is imperative that side effects resulting from cancer and its treatment are appropriately managed. For more information, go to Managing Side Effects.
New Chemotherapy Regimens: Development of new multi-drug chemotherapy treatment regimens that incorporate new or additional anti-cancer therapies for use as treatment is an active area of clinical research carried out in phase II clinical trials. Questions of interest include the use of carboplatin in place of cisplatin in order reduce side effects, the combination of a taxane chemotherapy drug (such as paclitaxel) with cisplatin or carboplatin, and the addition of a third drug to gemcitabine and cisplatin.[3]
Targeted Cancer Therapies: Targeted therapies are drugs interfere with specific pathways involved in cancer cell growth or survival. Some targeted therapies block growth signals from reaching cancer cells; others reduce the blood supply to cancer cells; and still others stimulate the immune system to recognize and attack the cancer cell. Depending on the specific “target”, targeted therapies may slow cancer cell growth or increase cancer cell death. Targeted therapies may be used in combination with other cancer treatments such as conventional chemotherapy.
Several different types of targeted therapy are being evaluated for the treatment of advanced bladder cancer. For example, a phase II clinical trial suggested that the targeted therapy Herceptin® (trastuzumab; a drug used to treat breast cancers that overexpress a protein known as HER2) may be effective in combination with chemotherapy for patients with HER2-positive advanced bladder cancer.[4]
Phase I Trials: New anti-cancer therapies continue to be developed and evaluated in phase I clinical trials. The purpose of phase I trials is to evaluate new drugs and/or therapeutic approaches in order to determine the best way of administering the treatment and whether the treatment has any anti-cancer activity in patients with bladder cancer.
Multiple Drug Resistance Inhibitors: Bladder cancer can be drug resistant at the outset of treatment or develop drug resistance after treatment. Several drugs are being tested to determine if they will overcome or prevent the development of multiple drug resistance in bladder cancer and other cancers.
References:
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[1]von der Maase H, Hansen SW, Robers JY et al. Gemcitabine and cisplatin versus methotrexate, vinblastine, doxorubicin, and cisplatin in advanced or metastatic bladder cancer: results of a large, randomized, multinational, multicenter, phase III study. Journal of Clinical Oncology. 2000;18:3068-77.
[2]von der Maase H, Sengelov L, Roberts JT et al. Long-term survival results of a randomized trial comparing gemcitabine plus cisplatin, with methotrexate, vinblastine, doxorubicin, plus cisplatin in patients with bladder cancer. Journal of Clinical Oncology. 2005;20:4602-8.
[3] Iaffaioli RV, Milano A, Caponigro F. Therapy of metastatic bladder cancer. Annals of Oncology. 2007;18 (supplement 6): vi153-vi156.
[4]Hussain MHA, MacVicar GR, Petrylak DP et al. Trastuzumab, paclitaxel, carboplatin, and gemcitabine in advanced human epidermal growth factor receptor-2/neu-positive urothelial carcinoma: results of a multicenter phase II National Cancer Institute Trial. Journal of Clinical Oncology. 2007;25:2218-2224.
Copyright ©2009 University of Florida Shands Cancer Center. All Rights Reserved.
Site Created By CancerConsultants.com UFSCC
- By cat22
- Posted July 17, 2009 at 10:29 pm
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Thank you for this post! My husband Ben has T4 BC. Just got back from getting a second opinion at UCSF, and next Thursday Ben will be starting on one of the new Chemo regimens you mentioned: Carboplatin/ Gemcitabine/Paclitaxel. Will let you all know how it goes. He is scheduled for 4 cycles. Will do an MRI after second cycle. Hoping to shrink tumor enough to do surgery after cycle 4.
cat22
- By jj803
- Posted July 18, 2009 at 1:48 pm
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Glad to hear that you have a set plan and will be moving forward. Best wishes for successful therapy.
JJ
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