julesgreenb's Message Board Messages

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On Oct 16, 2016 12:57 PM vtoole wrote:

On Oct 15, 2016 9:11 PM bnelson wrote:

He was in the clinical trial in Bethesda, Maryland. National institute of health. Opdivo is approved for lung cancer. They stopped his treatment in august.
How long was your dad on Opdivo, Bonnie? Did it work initially? How long? What were the side effects? So, I'm assuming your dad's UA also metastasized to his lungs, correct? My husband refused to go on hospice and started on Alimta, a chemo, for advanced mesothelioma. He's not doing well at all. He's beyond a fighter. Hugs, Vivian
Hi Vivian, He really is a fighter. Is that chemo for asbestos caused cancer? Is it helping his lungs? I totally empathize. I'm using a walker because the cancer in my back is causing me a lot of pain. I'm going to do some radiation starting end of October to hopefully alleviate some of the pain. But doing radiation means taking a break from chemo and my lungs and liver are worsening and need the chemo. It's such balancing act. Plus all the pressure in my abdomen is causing a lot of stomach issues. It's so tough. Julia

On Oct 11, 2016 7:27 PM vtoole wrote:

On Oct 11, 2016 7:20 PM julesgreenb wrote:

What was your experience with Cabo/nivo? That's not what you meant by immunotherapy right? Did it work for a while? What about side effects? Julia
Hi Julia, my husband has not been on Carboplatin or Nivulomab. Cisplatin is stronger than carbopkatin and has more side effects. Nivolumab sounds like an immunotherapy drug (all the "mabs" seem to be in your drugs) but he was not on that. The Durvulumab he was on had no apparent side effects, but we believe strongly that it hastened the progression quite seriously is a short period of time. Not a proponent of the immunotherapy for UA patients in my opinion.
Sorry I was asking Bonnie.
What was your experience with Cabo/nivo? That's not what you meant by immunotherapy right? Did it work for a while? What about side effects? Julia

On Oct 10, 2016 6:17 AM bnelson wrote:

On Aug 23, 2016 1:17 PM vtoole wrote:

On Aug 23, 2016 7:08 AM christobell1 wrote:

Thank you for asking. Terrified! Trying to be positive.
Oh, one more thing. Don't be afraid to ask LOTS of questions and/or seek second opinions. Looking back over this blog, I compiled a long list of treatments others had had and presented them to my husband's doctors every step of the way. Also, inquire about genetic testing (known as Fiundatiin One testing here in the states). My husband has been on 3 different trials that have extended his life. They are continually blazing new trails in cancer every day now! Immunotherapy is one. But genetic testing pinpoints your specific gene abberations and those work for a number of months to slow the progress and/or partial remission. Let us know how you're doing as you go along!!! Hugs.
Can you tell me what 3 different clinical trials your husband has been in. My dad has been battling this horrible disease for 6.5 years. This past year has been a tough one. He did join a clinical trial in Bethesda, MD at the NIH hospital from March 2016 to august 2016. Treatment didn't work on him so they stopped his treatment. I'm desperately looking for another trial or treatment protocol for him. He is slowly getting weaker by the day. Thank you for your time. Bonnie
Hi Bonnie, Would you mind sharing what treatments your father has done over the years, especially those that you believe worked the best for him? I'm at 2 1/2 years and 6 1/2 sounds great to me right now. Thanks! Julia
Hi Reggie, His treatment sounds right. Many of us started with that one (FOLFOX or 5 FU)and found it effective. I'm doing a totally different chemo now but that's because over two and a half years in treatment those aren't working for me any more. Glad he is tolerating it well. That part varies. Regarding diet, I was vegetarian for 25 years prior to my cancer diagnosis and it was my oncology naturopath who told me to increase my protein intake so I started to eat meat. Now I find I'm very sensitive to cravings so I tend to follow whatever my body seems to be telling me it wants, which is often a protein. The main thing for diet or to reduce sugar including carbs. I also found as my digestive system got more sensitive eating vegetarian proteins like beans became more uncomfortable for me. Keep in touch! Hugs and prayers, Julia

On Aug 22, 2016 4:10 PM christobell1 wrote:


Thank you for your response. I am not sure but will check.

Kind regards


We are here for you Christobelle. :-) Julia

On Aug 22, 2016 9:21 AM christobell1 wrote:

Dear Mr Winter

Thank you for your inspiting entry.

My boyfriend has Urachal Cancel and had surgery to remove a tumour last April. They have now discovered 3 lung nodules and he starts chemo on Thursday.

We live in the UK, however this site seems to have a wealth of information.

My question is has chemo been a success for any readers and what side effects have they experienced?

Also we have drastically changed his diet (started a couple of weeks ago), any further tips would be greatly appreciated. He is 49.


Do you know which chemo your boyfriend will be getting? They are all different. Most of us have gone through chemo, many of us more than one. As the docs will tell you everyone is different so no two people will have exactly the same reaction. Plus the dose is a factor. I usually end up having a lot of side effects after the first round then my oncologist lowers the dose a bit which helps a lot. Other people find the effects of chemo are accumulative and get worse after more rounds.
Hi all, After eight rounds of FOLFIRI it has stopped working and my tumours are once again growing and spreading. My oncologist is suggesting we try the next in line for colon cancer since my tumours have responded relatively well to the first two, FOLFOX and FOLFIRI. Cetuximab is not chemo per se but a targetted antibody, but it hasn't been found to be effective if the KRAS gene has mutated, so my tissue is currently being analyzed for that. On top of this my oncologist will have to get permission to prescribe it off label since it is a colon cancer treatment, not bladder. I'm wondering if anyone in this forum has tried this treatment. Hoping people are doing well. Julia
Hello Greygay, I hear where you are coming from. I too am not Christian, don't believe in hell, have spoken to my home nurse about the new doc assisted dying law here in Ontario, have attended a full day workshop on end of life options and issues, and spent a year in the care of an naturopathic oncologist in which I took many of the suppliments you listed including injecting myself with iscador. That said, i must also admit that seeing your post on death with dignity took me aback. It was not one of my good days when I saw your post. I had come looking for ideas, for hope, for personal sharing and support. I think I wouldn't mind posts of personal thoughts and feelings around end of life, I just don't want to be preached to on this forum. I know you mean really well but I'd be much more interested to hear your personal experienes and appoach to living as a fellow urachal cancer patient and yes that could include your thinking about your own death. You also have to understand that there are family members on this list who may be particularly sensitive to the death topic. I wish you all the best. Take good care, Julia

RE: Checking in

by julesgreenb - July 16, 2016

On Jul 07, 2016 3:55 PM vtoole wrote:

Hello All! So good to see so many of you back on here. I, too, was thinking of this blog and that I had not seen a Cancer Compass message pop up on my email for quite some time now. Julesbgreen...so happy to hear of your recent travels...and your treatment. Would be willing to you share more info as to where your cancer had spread and what prompted the FOLFIRI treatment? As some of you may recall, my husband has been battling this rare cancer for 6 1/2 years now (initially diagnosed in December 2009). Last spring (2015), he began a Targeted Therapy (BVD523) at MDA for one gene mutation. By September 2015, however, the cancer had spread to his brain. He had gamma knife brain surgery (radiation) and, even though they usually are only willing to give that a go with 4 or less tumors (my husband had 7), it was successful. All 7 brain tumors resolved and he began another Targeted Therapy (these are all experimental) -BMN673 for yet another different gene abberation in November 2015. This new trial drug ( a PARP inhibitor) was very successful for the first 2 months and all tumors/cancer receded by 35%. The doctor at MDA was very excited, and called it a "partial remission," although that was short lived- as are so many of these targeted therapies. By May of 2016, the trend was going in the opposite direction and another tumor had formed in his lungs (he had a new one show up and now had 3 lung tumors). He is now on his 3rd targeted therapy trial in Dallas (our home town) - a combination of Mocetinostat (an HDAC inhibitor) and Durvulomab (an immunotherapy drug). In about another 5 weeks, CT's will be done to see what the status is at that time. A lot has taken place in a year's time. We have both just retired and are heading back home - as I type - after a 2 week total r and r vacation at our dear friends' lake house in Georgia, outside of Atlanta. We are hoping to take a trip to Florida soon to visit family and are also planning a trip to Santa Barbara, Ca. in September. Hoping all continues to go well until the fall. It is so good to hear from those of you who have been posting. My thoughts and heartfelt support goes out to all of you. This is a difficult journey none of us would pr for to be on. Peace, Vivian
Hi Vivian, Your journey continues to amaze me. I don't know if I could go through everything your husband has and be as well as he seems to be. How does he tolerate it? I always suffer so much, although in Februrary radiation completely cured months of excrutiating pain caused by enlarged abdominal nodes pressing on nerves in my back and squeezing my ureter closed. I also had to have a nephrostomy on my left kidney. To answer your question, in addition to the abdominal nodes, the cancer has spread to my lungs, liver, spine and neck. After six rounds of FOLFIRI the tumours shrunk about 30% or so, but as you say, sometimes these positive outcomes are short lived, Now after eight rounds I'm getting a break and having another ct scan next week. One reason we stopped is after my last round I fainted one night and fell quite badly hurting my back and then fainted again when my partner tried to move me to the bed. So in addition to the chest, abdomen, pelvis ct scan I'm having a head and back MRI. I hope the cancer hasn't moved into my brain but I was very encouraged to read about how successful your husband's radiation treatment was and if, lord help me, this is my fate then it gives me something to ask about especially since we know that my cancer has responded well to radiation before. What symptoms did he have. How did you discover the brain tumours? My oncologist is thinking about more phase one clinical trials for me but the one I did last winter was sheer hell for me and didn't work. I really need to have more gene testing done. The oncologist in Cuba I connected with about their immunotherapy treatments asked that I get a couple of specific gene tests done on my tumour tissue while I was doing chemo. That's my next move. Please do keep in touch!! Big big hugs, Julia
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About julesgreenb

Bladder Cancer, Colon Cancer, Other Cancer
Cancer Treatments, Clinical Trials and Research, Side Effects, Support, Surgery

I have metastasized urachal cancer. I was diagnosed in early 2014 and during that year had chemo, radiation and surgery. Since then I've done alternative treatments, a phase one clinical trial that didn't work for me and two more chemos, one worked temporarily, the other in prgress as of fall 2016. I've had a lot of pain and discomfort from this cancer.

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