Urachal Cancer Survivor

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RE: Chemo treatment for urachal cancer

by Fiona2020 on Tue Jan 07, 2020 06:40 PM

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On Jan 02, 2020 5:22 PM dstef69 wrote:

HI Fiona, I’m Daniel, I was diagnosed with urachal cancer Dec 2018. Jan 13 ’19 I had laparoscopic surgery in Atlanta (7x6x5.5cm tumor,partial bladder, urachus and umbilicus removed, no lymph nodes found). 6 weeks after the surgery I started kemo,6 cycles of GEM FLP(dexamethasone,leucovorin,5FU,cisplatin and Gemstar/gembcitabine)at MD Anderson which I finished middle of June ‘19 . Same like you 1 week on 2 weeks off. The place is great, good food, the doctors are with you all the time, talk with them if you have any problems. They asked me to walk because my body retained water so I walked around 2 miles every day on the skybridge between main building and mayo clinic which it’s about .25miles one way. A little bit of nausea at the end of every cycle but I was good enough to fly back home (Atlanta GA) The treatment side effects was Tinnitus and a little hearing loss which started after the 2ndcycle. I saw an ear dr. there but it wasn’t too bad and actually I still have it but learned to ignore it.The "" target="_blank" rel="nofollow">http://it.The " target="_blank" rel="nofollow">it.The biggest problem for me is neuropathy on my hands (numbness on my palms) and my feet. Actually the hands aren’t that bad but the feet are numb all the time which is hard especially winter time (getting cold very fast).It started after the 5thcycle and got worse after that. I took magnesium, gabapentin but it didn’t help. The dr. said that it might go away after 1 ½ to 2 years. Overall the treatment didn’t worked for me, on the last ct scan (dec21’19) they found small nodules in my lungs so I’ll be back January 24 for full body scan/bones and go from there. I wish you all the best and I Hope the treatment will work for you!

your post is a helpful relief to interact with a real and similar patient. thanks for being so kind as to share.

Am i understanding correctly you had the surgery Jan 2019 but NO mets until Dec 2019?  i had same sx (Oct 2017) as you but open abd (no nodes and clear margins no mets) but was NOT offered chemo post surgery, then develped lung mets 2y post op (Aug 2019).

I am so relieved to hear you tolerated the 6 G-FLP cycles w/o major side effects. I hear tinnitis and neuropathy are typical of Cisplatin. Do you think it was the best treatment or have you heard of others? What do you think about your recent lung mets finding and what treatment will you opt for next?

I start G-FLP R#1 Monday Jan 13th - 18th so will miss the opportunity to personally thank you and I cheer your fight, as you have with mine.

RE: Chemo treatment for urachal cancer

by dstef69 on Tue Jan 07, 2020 08:18 PM

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Actually here in Atlanta my oncologist prescribed FOLFOX but dr.Siefke r said that G-FLP was/is a better treatment.As we speak foundation one is doing the genomic test and if the results are good I’ll start immunotherapy.Otherw ise I guess I’ll start another chemo treatment at MD Anderson.My next appointment is January 24 but if the test results are done I’ll fly to MDAderson next week.If You want you can text me your info(404. 668 7992)and I’ll stop by.

RE: Chemo treatment for urachal cancer

by Fiona2020 on Tue Jan 07, 2020 10:04 PM

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On May 12, 2019 4:59 AM Michaelscrosby wrote:

Hi Daniel, glad to hear it’s going well. The first 4 rounds for me went smoothly, round 5 and 6 were difficult as my body had finally had all the chemo it could handle. So hang in there and hunker down for the last 2 rounds. But I made it through all 6 rounds and so can you. I had and still have the same spots in my lungs like you, all remained stable and haven’t changed in over 2 years so they say it’s probably nothing to worry about but they still check and document them with each passing CT scan. I’m coming up on two years since my last chemo treatment and up until now I fly down to Houston every three months for follow up CT. Actually they just graduated me to scans every four months as I approach my two year post chemo. In fact I will be at MDA on May 29-30 for my next CT, if you will be there then perhaps I could come visit you, please let me know. Regarding the ringing in your ears, I had the same thing from the cisplatin and I’m sorry to let you know that two years post chemo and no improvement for me. Hopefully yours will go away. But for me I just view it as a small price to pay for a chance to be cured. Just turn your favorite music up a little louder and you won’t even hear the ringing. Ha-ha. Actually it’s when it’s quiet that it bothers me most, I sleep with fan or sound machine and it seems to help. Hope the rest of round 4 goes smooth and wish you the best for your final 2 rounds. Safe travels and keep me posted with updates.

Dear ALL Urachal Adenocarcinoma contributors,

I've so appreciated your informative posts. I had appropriate UA surgery Oct 2017 w clear nodes/margins and no mets, but was not offered prophylactic chemo. Lung mets Aug 2019 and start G-FLP this Monday at MDAnderson.

Now for the questions: What are your thoughts about your treatment and results? Do you think post op prophylactic chemo would have made a difference for those w mets? Tips for pushing through chemo? Any other treatments you have heard of?

I do not think MDA is looking to change their regime but i hear of abdominal cancer patients even for rare appendix CA receiving Hyperthermic intraperitoneal chemotherapy (HIPEC) post op who have not developed mets years out, about promising anti-angiogenesis drugs likeBevacizumab (Avastin®) that rob CA of blood supply, giving G-flip w high dose IV vit C, or more frequent administration of lower dose G-FLIP with irinotecan. What have you heard about other treatments?

a thousand thanks!

RE: Chemo treatment for urachal cancer

by ToddlerFather on Wed Jan 08, 2020 02:59 AM

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On Jan 07, 2020 8:18 PM dstef69 wrote:

Actually here in Atlanta my oncologist prescribed FOLFOX but dr.Siefke "" target="_blank" rel="nofollow">http://dr.Siefke " target="_blank" rel="nofollow">dr.Siefke r said that G-FLP was/is a better treatment.As "" target="_blank" rel="nofollow">http://treatment.As " target="_blank" rel="nofollow">treatment.As we speak foundation one is doing the genomic test and if the results are good I’ll start immunotherapy.Otherw "" target="_blank" rel="nofollow">http://immunotherapy.Otherw " target="_blank" rel="nofollow">immunotherapy.Otherw ise I guess I’ll start another chemo treatment at MD Anderson.My "" target="_blank" rel="nofollow">http://Anderson.My " target="_blank" rel="nofollow">Anderson.My next appointment is January 24 but if the test results are done I’ll fly to MDAderson next week.If "" target="_blank" rel="nofollow">http://week.If " target="_blank" rel="nofollow">week.If You want you can text me your info(404. 668 7992)and I’ll stop by.

+1 to doing Foundation One, but it can only be done if tumor is in reach of surgical sampling. 

For me it was key in selecting which drug developments to follow. 

RE: Jane Responds to Urachal Treatment

by Crystalz on Wed Jan 15, 2020 12:08 AM

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On 7? 27, 2006 12:00 ?? Urachualknower wrote:

Hey Derrik As your wife most likely mentioned, she and I had a very nice discussion. I hope your first day of work was great and not to tough. Today Jane got the results of her PET/CT after being on the experimental (and yet to be named drug). It appears her cancer is responding to it. Since April of this year, has cancerous lymph node has not grown in size nor has the cancer spread any place else. That is really great news since her infected node is sitting in a place that is causing her no problems. She is continuing with the regime for the next 28 days and will be scanned again in Sept. That is when the dr. will get to see if she is responding for sure and perhaps see the beginnings of a push back on the node. AS for Jane, she is thrilled given that this drug (in pill form every other day) has not caused any symptoms thus far (not even hair loss). Good news for all urachal patients. If you hear of anyone whose cancer is further advanced than Jane's and is looking for something to do, have them contact me. I think there is still room in the trial. Meantime, I hope you remain "cancer freeeeeeeeeeeee"!!!!!!! But I'll keep you up to date anyway --- just in case Jane is the break thru we are all looking for!! Our thoughts and prayers are with you for your continued healthy recovery. Melissa
Hi mellisa, do you know what chemo drugs is good to urachal Cancer? My husband is 39 years old and He was diagnosed that adenocarcinoma in Bladder with pelvic and retroperitoneal lymph nodes in August, 2018 and he had radical cystectomy, extraperitoneal lymph node dissection, retroperitoneal lymph node dissection and orthotopic neobladder struder reconstruction in Glasgow, Scotland, Unite Kingdom. After that the doctor here didn’t give him any treatment so he went back to China and had four cycle of chemotherapy which is Bevacizumab 400mg monocycle/300mg double-cycle+ Irinotecan 300mg+ L-CF 300 mg+ 5-Fu 3.75g. After that he came back to UK and didn’t continue the treatment. He had back pain since June 2019 and the doctor didn’t find anything from the CT scan. The pain got worse and he went back to China again and MRI Scan and found out the lymph node affect his Spine. He had a operation to removed the lymph nodes and rebuild the bones at his back and had 10 days radiotherapy at his back. It doesn’t work very good and he found out other place’s bone is affected. So i am Iwondering did you know any chemotherapy is good for his condition? We have three young children need to look after and we really hope any body can help with his condition. Rong

RE: Chemo treatment for urachal cancer

by Crystalz on Wed Jan 15, 2020 12:19 AM

Quote | Reply

On 1? 07, 2020 6:40 ?? Fiona2020 wrote:

On Jan 02, 2020 5:22 PM dstef69 wrote:

HI Fiona, I’m Daniel, I was diagnosed with urachal cancer Dec 2018. Jan 13 ’19 I had laparoscopic surgery in Atlanta (7x6x5.5cm tumor,partial bladder, urachus and umbilicus removed, no lymph nodes found). 6 weeks after the surgery I started kemo,6 cycles of GEM FLP(dexamethasone,leucovorin,5FU,cisplatin and Gemstar/gembcitabine)at MD Anderson which I finished middle of June ‘19 . Same like you 1 week on 2 weeks off. The place is great, good food, the doctors are with you all the time, talk with them if you have any problems. They asked me to walk because my body retained water so I walked around 2 miles every day on the skybridge between main building and mayo clinic which it’s about .25miles one way. A little bit of nausea at the end of every cycle but I was good enough to fly back home (Atlanta GA) The treatment side effects was Tinnitus and a little hearing loss which started after the 2ndcycle. I saw an ear dr. there but it wasn’t too bad and actually I still have it but learned to ignore it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The "" target="_blank" rel="nofollow">http://it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The "" target="_blank" rel="nofollow">http://it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The "" target="_blank" rel="nofollow">http://it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The "" target="_blank" rel="nofollow">http://it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The "" target="_blank" rel="nofollow">http://it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The "" target="_blank" rel="nofollow">http://it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The "" target="_blank" rel="nofollow">http://it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The "" target="_blank" rel="nofollow">http://it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The "" target="_blank" rel="nofollow">http://it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The "" target="_blank" rel="nofollow">http://it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The "" target="_blank" rel="nofollow">http://it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The "" target="_blank" rel="nofollow">http://it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The "" target="_blank" rel="nofollow">http://it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The " target="_blank" rel="nofollow">it.The biggest problem for me is neuropathy on my hands (numbness on my palms) and my feet. Actually the hands aren’t that bad but the feet are numb all the time which is hard especially winter time (getting cold very fast).It started after the 5thcycle and got worse after that. I took magnesium, gabapentin but it didn’t help. The dr. said that it might go away after 1 ½ to 2 years. Overall the treatment didn’t worked for me, on the last ct scan (dec21’19) they found small nodules in my lungs so I’ll be back January 24 for full body scan/bones and go from there. I wish you all the best and I Hope the treatment will work for you!

your post is a helpful relief to interact with a real and similar patient. thanks for being so kind as to share.

Am i understanding correctly you had the surgery Jan 2019 but NO mets until Dec 2019?  i had same sx (Oct 2017) as you but open abd (no nodes and clear margins no mets) but was NOT offered chemo post surgery, then develped lung mets 2y post op (Aug 2019).

I am so relieved to hear you tolerated the 6 G-FLP cycles w/o major side effects. I hear tinnitis and neuropathy are typical of Cisplatin. Do you think it was the best treatment or have you heard of others? What do you think about your recent lung mets finding and what treatment will you opt for next?

I start G-FLP R#1 Monday Jan 13th - 18th so will miss the opportunity to personally thank you and I cheer your fight, as you have with mine.

Hi Fiona, Could you tell me what is G-FLP? What does is that? Rong

RE: Urachal Cancer Survivor

by ClodiaFromITALY on Tue Jan 21, 2020 11:05 AM

Quote | Reply

On dic 24, 2019 8:57 Drsongbird wrote:

On Dec 24, 2019 1:03 AM SMMile wrote:

Lasted @ 7 months on Opdivo portion, then toxicity too much. Groin lymph nodes still stable, may have surgery, lymphectomy. Find another clinical trial, 1st phase, if it gets worse.
Dear SMMile, Let me recap: you were on Opdivio for 7 months, then the drug was to much for your system. You indicated your lymph nodes were still stable, but you are still thinking about lymphectomy surgery. You are looking through another clinical trial which tells me you have been through one already. You are looking to be involved in this clinical trial if things get worse. I hope I have understood. SM, what you are giving a is a report on where you are now; I am very glad for the success you have already had. It also sounds like you are on the verge of making some major decisions in your treatment plan. I may be incorrect, but it feels to me like you are making these decisions on your own, without the benefit of qualified cancer trained medical help like a medical doctor, a medical social worker or another individual that can share their experience with you. I know from my own experience that having someone in your court that has been where you are, worked with people who have your diagnosis ( which you didn’t share), or certainly a medical professional who has successfully treated individuals with your medical diagnosis. Nothing is more believable than someone who has been successful and can share their knowledge and experience with you, applying it to your specific situation. If you have not already done so, I would advise you to contact one of the Major medical institutions that deal with cancers of your type like Mayo’s, The Cleveland Clinic, NorthWestern University ( Chicago), MDAnderson in Houston, and so many, many more. They have knowledge and experience to offer you and they will walk with you as you make you choice. They can coordinate your care and create a treatment plan that is directly aligned with your best interests. You will have a place to ask questions and get answers. And you will have a focus and direction for your care. Please don’t give up: we are here to exchange information and support each other in our walks through cancer. You need not deal with this alone. When I started this thread many years ago, I had walked through a good deal of my urachal cancer diagnosis alone (1994 Urachal Cancer surgery) as a 40 year old single dad with four small children who were my priority. There was no internet, and very very little about urachal cancer. 25 years later I am blessed to say that I have had no recurrence of my urachal cancer and I may in fact be the longest living documented UC survivor. I only had surgery. No radiation or chemo for that cancer. I am not lucky. I had help from everywhere that offered it. I chose the absolute best medical care/surgeon that was available. I chose the surgeon who had the most survivors at that time. That strategy and a lot of prayer worked for me. I do not mean to imply that the road has been easy; it has been incredibly difficult. Over the years I have had colon cancer, thyroid cancer, and most recently I am in remission from high-risk multiple myeloma. I have had two PEs, a clot that plugged my portal vein. I have had more than 20 major surgeries. I’ve had two stem-cell transplants, have lived through an extended coma resulting from swine flu, and so much more. I could literally fill this page with medical issues and procedures I’ve had. I tell you all of this because I want you to know the road is not easy. It’s damn difficult. My advice to you is get the best care you can find. Don’t settle for something close. Face the next thing like you faced the last thing one day at a time. Surround. Yourself with people who support you and who will provide you with what you need. Love your family. Except help even if you hate doing that. Listen more than you talk. Work hard. If you have a choice choose to, get up and do. Rest when you need to rest. Tell the important people in your life that you love them. It’s hard but you can do it. Take risks. Love. Get away from the people who drag you down. When you have eliminated them from your life, you will be surprised how much time you have to focus on getting healthy. Pray, pray, pray. It works. Find someone to share the intimacy of your struggle with-the big things and the little things. Keep trying and don’t ever waste your breath on asking why anything. Why doesn’t matter. Dealing with things does. That’s how I’ve made it through. I love you all and I am so proud of what you have made this thread. Thank you all. Dr. Songbird 12/23/2019

Dear Dr. Songbird,

thanks for this shared message.

I am fighting very hard for the recovery of my boyfriend (30years old) who is in IV stage now.

He has already had several surgeries: 

First of all urachus residuals, belly bottom and dome of the bladder. After one year, another surgery for remove several nodules in the lungs, and now we've just found out some strange lymp nodes in the abdome. After the first surgery he tried XELOX chemo-treatment without a real benefit.

Our hospital is the Humanitas Cancer Center in Milan (Italy), but for now there's no experimental available protocol for him.

You or other persons here have some advice to give us?

Thanks in advance

Clodia

RE: Urachal Cancer Survivor

by SMMile on Thu Feb 20, 2020 04:58 AM

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Thank you very much for your valuable and heartfelt message.

RE: Urachal Cancer Survivor

by Drsongbird on Thu Feb 20, 2020 07:21 AM

Quote | Reply

On Jan 21, 2020 11:05 AM ClodiaFromITALY wrote:

On dic 24, 2019 8:57 Drsongbird wrote:

On Dec 24, 2019 1:03 AM SMMile wrote:

Lasted @ 7 months on Opdivo portion, then toxicity too much. Groin lymph nodes still stable, may have surgery, lymphectomy. Find another clinical trial, 1st phase, if it gets worse.
Dear SMMile, Let me recap: you were on Opdivio for 7 months, then the drug was to much for your system. You indicated your lymph nodes were still stable, but you are still thinking about lymphectomy surgery. You are looking through another clinical trial which tells me you have been through one already. You are looking to be involved in this clinical trial if things get worse. I hope I have understood. SM, what you are giving a is a report on where you are now; I am very glad for the success you have already had. It also sounds like you are on the verge of making some major decisions in your treatment plan. I may be incorrect, but it feels to me like you are making these decisions on your own, without the benefit of qualified cancer trained medical help like a medical doctor, a medical social worker or another individual that can share their experience with you. I know from my own experience that having someone in your court that has been where you are, worked with people who have your diagnosis ( which you didn’t share), or certainly a medical professional who has successfully treated individuals with your medical diagnosis. Nothing is more believable than someone who has been successful and can share their knowledge and experience with you, applying it to your specific situation. If you have not already done so, I would advise you to contact one of the Major medical institutions that deal with cancers of your type like Mayo’s, The Cleveland Clinic, NorthWestern University ( Chicago), MDAnderson in Houston, and so many, many more. They have knowledge and experience to offer you and they will walk with you as you make you choice. They can coordinate your care and create a treatment plan that is directly aligned with your best interests. You will have a place to ask questions and get answers. And you will have a focus and direction for your care. Please don’t give up: we are here to exchange information and support each other in our walks through cancer. You need not deal with this alone. When I started this thread many years ago, I had walked through a good deal of my urachal cancer diagnosis alone (1994 Urachal Cancer surgery) as a 40 year old single dad with four small children who were my priority. There was no internet, and very very little about urachal cancer. 25 years later I am blessed to say that I have had no recurrence of my urachal cancer and I may in fact be the longest living documented UC survivor. I only had surgery. No radiation or chemo for that cancer. I am not lucky. I had help from everywhere that offered it. I chose the absolute best medical care/surgeon that was available. I chose the surgeon who had the most survivors at that time. That strategy and a lot of prayer worked for me. I do not mean to imply that the road has been easy; it has been incredibly difficult. Over the years I have had colon cancer, thyroid cancer, and most recently I am in remission from high-risk multiple myeloma. I have had two PEs, a clot that plugged my portal vein. I have had more than 20 major surgeries. I’ve had two stem-cell transplants, have lived through an extended coma resulting from swine flu, and so much more. I could literally fill this page with medical issues and procedures I’ve had. I tell you all of this because I want you to know the road is not easy. It’s damn difficult. My advice to you is get the best care you can find. Don’t settle for something close. Face the next thing like you faced the last thing one day at a time. Surround. Yourself with people who support you and who will provide you with what you need. Love your family. Except help even if you hate doing that. Listen more than you talk. Work hard. If you have a choice choose to, get up and do. Rest when you need to rest. Tell the important people in your life that you love them. It’s hard but you can do it. Take risks. Love. Get away from the people who drag you down. When you have eliminated them from your life, you will be surprised how much time you have to focus on getting healthy. Pray, pray, pray. It works. Find someone to share the intimacy of your struggle with-the big things and the little things. Keep trying and don’t ever waste your breath on asking why anything. Why doesn’t matter. Dealing with things does. That’s how I’ve made it through. I love you all and I am so proud of what you have made this thread. Thank you all. Dr. Songbird 12/23/2019

Dear Dr. Songbird,

thanks for this shared message.

I am fighting very hard for the recovery of my boyfriend (30years old) who is in IV stage now.

He has already had several surgeries: 

First of all urachus residuals, belly bottom and dome of the bladder. After one year, another surgery for remove several nodules in the lungs, and now we've just found out some strange lymp nodes in the abdome. After the first surgery he tried XELOX chemo-treatment without a real benefit.

Our hospital is the Humanitas Cancer Center in Milan (Italy), but for now there's no experimental available protocol for him.

You or other persons here have some advice to give us?

Thanks in advance

Clodia

Dear Clodia: I am sorry to have taken so long to reply. I was in the hospital the second half of December and twice in January. My hospitalizations were for RMV virus, pneumonia, and dizziness when I rise from bed ( I’m sorry to have forgotten the correct name of this last affliction.) I pray for your boyfriend when I remember to do so. I hope now he is having some success in fighting his cancer. One step at a time is the only way I know. I do no not have any connections or names to share at your hospital. My suggestion now is to contact a major cancer center in Europe to se if a doctor or two would be willing to give you a second opinion in reguard to the cancer your boyfriend is going through. I have been very fortunate and have found doctors to be more than willing to review submitted medical records and to offer their opinions. Sometimes it is for surgery, sometimes medication. You will need to ask your current doctors for a referrals to the best European medical center that deals with your specific type of cancer, and then do your best research to find a doctors name to send your boyfriends medical records to-your current doctors may know a name for you to contact. You are your boyfriends advocate. Do everything you can. I pray you will find a worthy individual who will share his or her experiences with your doctors. It is that kind of networking that will help with your boyfriends treatment. I will pray you can find the right individual or team to get your boyfriend the help he needs. Please let me know-and the cancer compass readers here know what is happening as they may be able to share their own current success and referrals to the the medical professionals you need. I know it will be difficult for you. You are the best option your boyfriend has, and I feel sure he will appreciate your efforts. May God bless you both. Doc
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