Update
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
Comments
-
derMaus update
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
0 -
Not what I had hoped
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.
0 -
Prayers for you
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.
0 -
I am so sorry. I've heard
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.
0 -
B, prayers your way my friend
B, prayers your way my friend. Keep bugging your doctors to work for you. Hugs.
0 -
In my thoughts and prayers
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.
0 -
Oh Bobbie, I am so sorry. I
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
0 -
Oh B, so sorry to hear this!
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
0 -
You are in my thoughts and prayers!
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
0 -
I think you're overdue for some good luck
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!
0 -
This is lovely...Donna Faye said:In my thoughts and prayers
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.
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
0 -
This is hard to hear
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.
0 -
Wanted to offer my thoughts &
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.
0 -
derMaus
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.
0 -
Will be thinking of you Bobbi
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.
0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.8K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 397 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.4K Kidney Cancer
- 671 Leukemia
- 792 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 237 Multiple Myeloma
- 7.1K Ovarian Cancer
- 61 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.5K Prostate Cancer
- 1.2K Rare and Other Cancers
- 539 Sarcoma
- 730 Skin Cancer
- 653 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards