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Update

derMaus's picture
derMaus
Posts: 559
Joined: Nov 2016

I'm overdue to post an update but have been procrastinating because the news isn't so good, and because the field keeps shifting under me. Every time I think I know what to report, something new comes along. Seven weeks ago, I was hospitalized for 5 days with DVT in my left leg (not to be confused with lymphedema in my right leg). I had severe pain in the hospital and a subsequent MRI, then PET, indicated that my long-standing tumor under the psoas muscle - the one that had been CyberKnifed earlier this year - was kicking up again. The part that was radiated is dying off but a piece - or an entire new, but adjacent tumor - has sprouted off the back and is growing very quickly.

This is almost exactly the same scenario from a year ago: while radiation is getting one bad spot under control, a dumpster fire breaks out down the street and threatens to take everything down. In addition to being sorely disappointed that Keytruda isn't working anymore, or at least isn't working on this particular subset of cells, the imaging also revealed that the tumors were compromising my left kidney and pressing on my vena cava which, per my oncologist, is affecting my circulation and exacerbating the swelling in my legs/ankles/feet/hips. A urologist recommended a catheter, aka pee bag (just like Cheese!), to drain the kidney and "decongest" the area. That was attempted two weeks ago but, unfortunately, the the access point was blocked by the tumor so the surgery was a failure. The oncologist insists the urologist try for a stent (Cheese again!). Urologist is willing but predicts only a 30% success rate :(.  That surgeryis scheduled for Tuesday, the day after tomorrow. Please wish me luck and pray for me! Meanwhile, due to either (1) tumor growth, or (2) radiation damage, or (3) spinal stenosis unrelated to either of the above, I've been having horrible back spasms and am back on my Fentanyl patches. All the pain killers, and/or the kidney blockage, have caused constipation (hello, Senekot!), nausea and lack of appetite. I can't walk very far w/o a walker to sit and rest, and am spending most of my time lying on an ice bag.

I see my doc on Wednesday to discuss the next course of action. Based on my Foundation One profile, he wants to try everolimus or another M-Tor blocker this time around. The only bright side is that, per my urologist, all my recurrences are in the same location. I know I should be grateful for that, and I know how many of our members have it much worse than I do, but I'm still in too much pain and emotional despair to really process any positives just now.

Whew! I've needed to post this for a couple of weeks and just couldn't bring myself to do so. Heartfelt thanks to all of you that I've reached out to directly, and to all of you for being here and continuing to be active members of our community. I'll let you know how the surgery goes on Tuesday. Hugs, B

Northwoodsgirl
Posts: 527
Joined: Oct 2009

Oh dear derMaus...I only imagine how hard it must have been for you to write this update. You have been through so much....my heart aches for your pain and the uncertainty of what treatment to try next. Really, I want you to know that I am keeping you in my prayers... You have helped so many on this discussion board and there are many who hope to offer you some support and comfort. It seems that you and Cheese Queen have had similar health issues from this d***** disease. I will be thinking of you and sending you positivity and strength for victory over cancer. 

((Hug))

Lori

cmb's picture
cmb
Posts: 358
Joined: Jan 2018

I had been hoping that "no news" was good news for you, so I'm very sorry to hear of these latest rounds of difficulties and the pain that you've been experiencing. I hope that Tuesday's surgery will be successful at alleviating one of your current problems so that you and your doctors can determine the next steps. I'll be keeping you in my thoughts and wishing you the best possible outcome on Tuesday.

jan9wils's picture
jan9wils
Posts: 61
Joined: Mar 2017

What a wretched 7 weeks this has been for you. I am praying for you and will ask God to guide your doctor's hands as you undergo surgery Tuesday. 

SF73
Posts: 264
Joined: Oct 2017

Dear DerMaus. I am so sorry to hear about the health issues you are having. I will be thinking of you on Tuesday. Wishing you all the best. Let us know how the surgery goes. 

Forherself's picture
Forherself
Posts: 185
Joined: Jan 2019

I am sorry you didn't have better news.    I really hope they can deal with that pain problem.   Have they added in muscle relaxers?  I pray for the best outcome of surgery.

barnyardgal
Posts: 212
Joined: Oct 2017

I am so sorry. I've heard good things about everolimus. Prayers for Tuesday and that the doctors come up with a good treatment plan for you.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2585
Joined: Mar 2013

B, prayers your way my friend.  Keep bugging your doctors to work for you.  Hugs.

Donna Faye's picture
Donna Faye
Posts: 241
Joined: Jan 2017

Sometimes there are no words to express the emotions one feels and that is how I am at this time - wanting to find the words for a friend I have never met in person but who has become someone whose posts I read - the ones you write to encourage others as well as the ones you share about your own battle. Someone I care about and am so saddened to hear of your latest struggles. If there is energy in the air around you, it is from all of us who wish you better outcomes and relief from pain and sickness. I am sending you all the good energy I can muster. I will be thinking of you on Tuesday and for many days after. 

oldbeauty
Posts: 191
Joined: May 2012

Donna Faye, what a beautiful, heartfelt statement of goodwill and good wishes.  May I please piggy-back on your loving words and add my expression of positive energy going Bobbi's way.  Best wishes, Oldbeauty

EZLiving66's picture
EZLiving66
Posts: 1345
Joined: Oct 2015

Oh Bobbie, I am so sorry. I can feel the misery in this post. I hate this disease!! Hopefully, this surgery will help. Pain control is so important but it sounds like that is not being done. My heart just breaks for you! I'm sending you all my positive thoughts to let you know I'm thinking of you.

Love,

Eldri 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1534
Joined: Jun 2015

Oh B, so sorry to hear this! I'm with Donna Faye on this one.... just don't seem to find the words that will express what I'm feeling. Please know that you are loved and supported from all of us on this site. I am sending cyber hugs and love to you now and during your surgery tomorrow. Please check back in when you are up to it.

Cindi

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018

Hi Bobbi,

Sending you cyber hugs!! Yes I hate this disease and the pain it causes. Hoping you get some pain relief and tomorrow Tuesday that surgery is successful. Again I surround you with my thoughts and prayers right now. xoxo

MoeKay
Posts: 206
Joined: Feb 2004

Bobbi, wishing you the best of luck with your stent surgery tomorrow.  Hope you doctor has a good plan of action on Wednesday and that you are pain free very soon!  I'm hoping and praying that your next update is so encouraging that you can't wait to post it!

MAbound
Posts: 859
Joined: Jun 2016

Like everyone else I am struggling with what to say under the circumstances. What Cheese has been enduring has been so upsetting and now to learn that over on the other coast you are enduring much of the same just sucks all of the intelligence out of me. I'm reduced to babble and so can only say "ditto" to what others have already posted. Just know that we care deeply about what is happening to you and want you to not give up. Selfish, I know, but you've touched so many with your presence here. Thank you for thinking of us when it had to be so hard to share what you did. Know that we'll be thinking of and praying for you through all that you are facing. 

mamlicsw's picture
mamlicsw
Posts: 26
Joined: May 2019

I'm so sorry for your suffering.  My heart goes out to you and I will be thinking of you throughout tomorrow, sending positive wishes and pulling for you and your treaters.  Mary Ann

Kathy G.'s picture
Kathy G.
Posts: 205
Joined: Dec 2012

Wanted to offer my thoughts & prayers!

Reading your post just makes me extremely sad! I just don't understand why some of us get off so easy yet others have to struggle with one challenge after another.

It's so unfair...

I will add you to my nightly prayer list. Best wishes for finding a pain free solution to your multiple issues.

Armywife's picture
Armywife
Posts: 294
Joined: Feb 2018

Bobbi, we sure do love you around here.  So proud of your bravery, and so thankful for the wealth of information and encouragement you bring to us.  I continue to pray for you and I hope you feel His comfort and our support tomorrow.  We look forward to hearing from you after the surgery!  Hugs, friend.

Wannabeatit
Posts: 97
Joined: Dec 2017

Will be thinking of you Bobbi. I hope tomorrow brings some better news. So sorry to hear about all this pain you are going through brave soul.

 

ConnieSW's picture
ConnieSW
Posts: 1442
Joined: Jun 2012

I will be thinking about you tomorrow. Keep your courage up. You are much cherished. 

SF73
Posts: 264
Joined: Oct 2017

Good luck tomorrow!

Jairoldi's picture
Jairoldi
Posts: 206
Joined: May 2017

The other ladies have so eloquently expressed everything I have thought of since reading your post. May the doctors find a way to manage your pain and eradicate those tumors that are wreaking havoc in your body. 

Donna Faye's picture
Donna Faye
Posts: 241
Joined: Jan 2017

You are in my thoughts as you begin or perhaps are ending the surgery. But when you awake, may things begin to be so much better. Take time to heal as surgery is rough on us, but let our good wishes flood your heart and may your nurses be the best ever. May the sun warm your face, may your family and friends cradle you in love and may the days ahead be better with each rising of the sun. Peace and love, dear Maus.  df

evolo58
Posts: 293
Joined: Dec 2017

You really are due for good news this time ... news so wonderful it makes you cry tears of joy.

ConnieSW's picture
ConnieSW
Posts: 1442
Joined: Jun 2012

In spades. 

derMaus's picture
derMaus
Posts: 559
Joined: Nov 2016

Hello friends,

God smiled on me and the surgeon beat the odds! I am now the (highly pained) owner of a stent, shades of Cheese! And I must say that putting up with this for a few hours gives me even more sympathy into what she put up with for nearly a YEAR. I can definitely feel it; the urination pain is like the worst UTI known to man along with bad PMS cramps - and that's with 2 prescription Tylenol, 2 Azo and 4 mg Dilaudid on top of my Fentanyl patch - BUT the damn thing is in. I'm so happy. Pee is coming out nicely, if painfully, and, best of all, the constant nausea of the last few weeks has abated. The urologist was able to get a bunch of scans while she was in there so more shall be revealed as to how bad the blockage was but, for now, I just had to share the news and thank you all for your generous support. I love this group, even though I hate that we all have to be here. xxoo B

Forherself's picture
Forherself
Posts: 185
Joined: Jan 2019

I believe in the power of many people praying.  I am so happy for you!!!    Now to manage that pain.   O happy Day :)

 

Armywife's picture
Armywife
Posts: 294
Joined: Feb 2018

Praise God!  Won't He do it!!  Praying for quick pain relief and that this is the first of much good news to come!!

 

EZLiving66's picture
EZLiving66
Posts: 1345
Joined: Oct 2015

That's wonderful but I hope the pain abates soon too!! 

Love,

Eldri

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018

Sorry to hear about the increased pain from the stent but glad you are peeing and the nausea subsided. Now to pray that the rest of your news from the docs is good news. Sending prayers your way right now. xoxo

zsazsa1
Posts: 322
Joined: Oct 2018

I'm happy for you that the surgery went well, and that the urinary blockage has been relieved.  Now I'm praying for you that they can do something to shrink the tumor and relieve the pain. 

Donna Faye's picture
Donna Faye
Posts: 241
Joined: Jan 2017

Girl, John Wayne did not have half the grit you are displaying! I checked back but did not expect to see anything from you. How delighted I am that all went well and though the pain is terrible now, you are just being the strong woman you are. Just too happy for words that all went well. Woo - hoo!!!!!!!!!!!

cmb's picture
cmb
Posts: 358
Joined: Jan 2018

While I know that you're experiencing a lot of pain right now, I'm so happy to hear that your surgeon was able to insert the stent, despite the odds. I hope that the pain subsides as your "innards" get more settled. And I'm sure the scans will help you and your doctors to consider next steps. One more hurdle overcome…

SF73
Posts: 264
Joined: Oct 2017

Just left work and immediately checked here to see if there was an update from you. So glad to hear that everything went well. Wishing you all the best. I hope the urologist has all kinds of new info that will inform the next steps. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1534
Joined: Jun 2015

Hey B, thanks so much for posting your great news! I hope your pain eases up soon and you continue to get good news.  

Take care of yourself sweet friend and keep us updated when you can!

Love and Hugs,

Cindi

jan9wils's picture
jan9wils
Posts: 61
Joined: Mar 2017

I was happy to hear the surgery was a success and astounded you were able to post. I do hope the pain subsides and that the tumors shrink with the everolimus. I will continue to pray for you as you recover from your surgery.

Northwoodsgirl
Posts: 527
Joined: Oct 2009

So happy to hear the stent was successfully placed for you! None of us know if or when we might develop this type of complication. Baby steps now on to healing. Still keeping you in my prayers as you find out more and make your next treatment decisions. Thank you for sharing your successful procedure. 

Lori

ConnieSW's picture
ConnieSW
Posts: 1442
Joined: Jun 2012

Can you see me grinning ear to ear?  I hope good things continue to evolve. 

Donna Faye's picture
Donna Faye
Posts: 241
Joined: Jan 2017

I was so glad to see your post on the hair questions! If I could dig that DC hat out of storage, I'd wear it for you! Do hope the stent is getting less painful and you are feeling better every day. Let us hear how things are going. Hugs! me 

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