Cheese Update

Harmony09

Glad for update

Hi Cheese!

I was really happy to hear from you after your visit at Hopkins. I'm so sorry there wasn't a solution, but the understanding is better. Perhaps the other doctor can change up or increase the pain management with the new information. I just hope you feel some relief! You and a handful of other women are my heroes on here. I have gained so much wisdom and hope from y'all. Please know you're in my continued prayers. 

Sincerely,

Stacey

CheeseQueen57

Update

Still having stent pain. I found that an ice pack to the crotch gives a little relief. So I’m seeking out those ice packs new mom’s use. I also discovered that the urology group at Hackensack University Medical Center does surgery for this problem and fortunately the wife of the CEO is an old friend of mine so she smoothed the way for me getting an appointment. They actually were willing to see me that afternoon!  It pays to have friends in high places! But I opted to see the head of the department in July after my next CT scan. My appointment with my urologist at Fox Cjade was disappointing. She had no solutions. Actually told me she had patients that have had stents for 10 years. Despite the fact that the stats for me having 10 more years are dismal, I certainly don’t want to live them with this damn stent. 

On another note, I found out that my oncologist is going to Penn and I’m considering transferring my care there. 

Thanks for your continuing concern my fellow warriors. 

MoeKay

Good Luck at your appointment at HUMC in July

In case you haven't seen it, here's an interesting article I came across on a man from Serbia who had surgery by Dr. S at HUMC:  http://www.hospitalnewspaper.com/webpages/news/displayNews.aspx?PT=news&ID=2c8f6d20-0957-40e9-ad4d-d3cde8dfa418.  Although this gentleman's condition, retroperitoneal fibrosis, sounds somewhat different than yours, the article states towards the bottom that, "Even though retroperitoneal fibrosis is a relatively rare condition, we use the same minimally invasive approach to treat other conditions involving obstruction of the ureter including patients with scar tissue from previous surgeries, patients who have had aorta aneurysms and patients who have had previous stone disease causing obstruction of the ureter. We use this technology to treat almost all upper urinary tract reconstructive procedures.”

This sounds extremely promising, Susan, and I hope you can find a permanent solution to your problem, because you can't spend the next 30-35 years in pain and getting replacement stents every few months!! 

Good luck and good health to you!

CheeseQueen57

Thanks

Thanks for sharing!  This is the doc I’m seeing. The doctor did describe my condition as retroperitoneal fibrosis but the cancer complicated the situation.  I love you ladies!! I’ll keep you posted. 

MAbound

Very Interesting

Thanks for the article MoeKay, it certainly was interesting and very uplifting to read since it turns out that this is actually what Susan has. Keeps hope alive that there is a solution to this coming.

I can't stand the thought of anyone in constant pain and have been keeping all dealing with it in my prayers. We haven't heard from Der Maus in a while and I'm quite worried about what's going on with her. Sending thoughts and prayers for strength and progress her way!

Susan, you've been amazingly strong and proactive through all of this. You are amazing!

CheeseQueen57

Update

My CT scan today was clear!  Praise the Lord!  The Megace continues to do the trick. Met my new oncologist today. Think I’ll stick with Fox Chase for now. Stent still painful although my bright idea of going for pelvic floor physical therapy I think helped a little and although my kidney scan was good a couple weeks ago the CT Scan this week showed some swelling of kidney so assume stent is getting crusty. I’m scheduled for stent replacement August 10 but I have appt with the doc at Hackensack so we’ll see what he says. Only relief is ice pack to crotch. Soldiering on!  At least no visible cancer!  

Jairoldi

CheeseQueen57 said:

Update

My CT scan today was clear!  Praise the Lord!  The Megace continues to do the trick. Met my new oncologist today. Think I’ll stick with Fox Chase for now. Stent still painful although my bright idea of going for pelvic floor physical therapy I think helped a little and although my kidney scan was good a couple weeks ago the CT Scan this week showed some swelling of kidney so assume stent is getting crusty. I’m scheduled for stent replacement August 10 but I have appt with the doc at Hackensack so we’ll see what he says. Only relief is ice pack to crotch. Soldiering on!  At least no visible cancer!  

Great news

That's terrific. A clear scan! Now to get that pesky stent to behave.

TeddyandBears_Mom

Cheese, YES!!!!!  So glad to

Cheese, YES!!!!!  So glad to hear this wonderful news. I hope they come up with a better solution for your stent soon.

Love and Hugs,

Cindi

derMaus

CheeseQueen57 said:

Update

My CT scan today was clear!  Praise the Lord!  The Megace continues to do the trick. Met my new oncologist today. Think I’ll stick with Fox Chase for now. Stent still painful although my bright idea of going for pelvic floor physical therapy I think helped a little and although my kidney scan was good a couple weeks ago the CT Scan this week showed some swelling of kidney so assume stent is getting crusty. I’m scheduled for stent replacement August 10 but I have appt with the doc at Hackensack so we’ll see what he says. Only relief is ice pack to crotch. Soldiering on!  At least no visible cancer!  

Oh Cheese that's wonderful!

Oh Cheese that's wonderful! Thank you for letting us know. It's so important to share the good things and that's a BIG ole good one. Now if only the stent-from-hell weren't being a butt head...

SF73

So glad to hear it.

Congrats on a clean CT Scan, Cheese. What a relief. I hope once replaced stent would not give you any trouble. 

EZLiving66

CheeseQueen57 said:

Update

My CT scan today was clear!  Praise the Lord!  The Megace continues to do the trick. Met my new oncologist today. Think I’ll stick with Fox Chase for now. Stent still painful although my bright idea of going for pelvic floor physical therapy I think helped a little and although my kidney scan was good a couple weeks ago the CT Scan this week showed some swelling of kidney so assume stent is getting crusty. I’m scheduled for stent replacement August 10 but I have appt with the doc at Hackensack so we’ll see what he says. Only relief is ice pack to crotch. Soldiering on!  At least no visible cancer!  

Great news but now we need to

Great news but now we need to get that stent pain under control!! (((Susan)))

Love ,

Eldri 

Armywife

Wonderful News!

What great news!  So happy for you, and praying you get some relief on the stent front.  

pato58

Cheese,

Thank you for the update and kudos on clear CT
Ice packs to the crotch area I am using myself every now and then for discomfort after Hysterectomy. Question, do you have specific ones for that purpose. If you do, do you get them at Medical supply store?
Hugs!

CheeseQueen57

pato58 said:

Cheese,

Thank you for the update and kudos on clear CT
Ice packs to the crotch area I am using myself every now and then for discomfort after Hysterectomy. Question, do you have specific ones for that purpose. If you do, do you get them at Medical supply store?
Hugs!

Ice packs

My fancy ice packs are frozen water bottles. I find they work the best. 

pato58

CheeseQueen57 said:

Ice packs

My fancy ice packs are frozen water bottles. I find they work the best. 

Thank you

 

 

oldbeauty

A sister who benefits from Progesterone!

I am so happy for you Cheese!  I got a good 5 years from hormone therapy.  Rock on!!  Best wishes, Oldbeauty

CheeseQueen57

oldbeauty said:

A sister who benefits from Progesterone!

I am so happy for you Cheese!  I got a good 5 years from hormone therapy.  Rock on!!  Best wishes, Oldbeauty

Thanks!

Thanks everybody!  Old Beautumn, I’m hoping for at least 5 years!  By then who knows what kind of new therapies we’ll have. Soldier on my friends!

MrsBerry

CheeseQueen57 said:

Update

My CT scan today was clear!  Praise the Lord!  The Megace continues to do the trick. Met my new oncologist today. Think I’ll stick with Fox Chase for now. Stent still painful although my bright idea of going for pelvic floor physical therapy I think helped a little and although my kidney scan was good a couple weeks ago the CT Scan this week showed some swelling of kidney so assume stent is getting crusty. I’m scheduled for stent replacement August 10 but I have appt with the doc at Hackensack so we’ll see what he says. Only relief is ice pack to crotch. Soldiering on!  At least no visible cancer!  

So glad there is no cancer!

So glad there is no cancer! Soldier on, indeed, warrior!

cmb

So glad

So glad to hear that Megace is working for you. I hope you and your doctors can find a solution to the stent problem soon.

Wannabeatit

That is great news! Now for

That is great news! Now for that darn stent grrr.