-
Diarrhea-When does it start?
Nine years ago, I was in a clinical trial for sutent and had horrible diarrhea. At times, I didn't want to leave home because it would hit with little or no warning. My cancer has now returned and I have been put on votrient. So far, no diarrhea. My question is: At what point after starting votrient did you begin to have…
-
chemo brain
I have been gettng mild headaches and sometimes I forget what I want to say. Of course I am thinking I that my cancer has spread to my brain. What are some of the signs of Chemo Brain.
-
Back Again IL2 Report
Again sorry folks for not responding to peoples blogs, but I was really wiped out after the second cycle of IL 2. On the 30th I get my next scan to see if is working or not. Here is where I get confused, having been through 2 cycles and knowing how sick and tired the drug made me part of me wants to get bad news, (I know…
-
I'm stunned
During a routine CT scan to evaluate my progress with Medullary Sponge Kidney a small suspicious nodule was found. An ultra sound was ordered and it was confirmed to be a solid mass 5.8 X 4.4 X 4 cm protruding from the inferior lower pole of my right kidney. I met with my kidney doctor yesterday and he told me about the…
-
Opdivo - Chromophobe
Just an update - after 10 months on Opdivo scans today showed my bone mets were still progressing. My doctor decided to move me to a new therapy Lenvatinib in combination with Everolimu. Anyone have experience with these drugs? PK
-
I went!
I made it to the concert! Sat down about 1/2 the time. Man I am gonna be sore tomorrow, I can feel it now. It didn't help we got stuck in the parking garage for 45 minutes after the concert was done. I'm gonna try and sleep for now thanks for all the input! Kerry
-
Am I nuts...
Hi everyone! My aunt and uncle have offered us tickets to the Paul McCartney concert. It's on Tuesday and 1 day shy of being 6 weeks post op. I really want to go but not sure if I'm ready to do something that strenous yet Or more that I will wilt before the concert ends. Would you go? Kerry
-
And now it starts
My wife is wonderful. Even with insurance the cabozantinib costs about a $1,000 a week! I refused. She worked on finding money through patient assistance programs. They said they were all broke. She then persistantly worked with the pharmacists at Yale and the drug manufacturer. I now have recieved my first months supply…
-
Scar pain
Wondering if anyone with a partial robotic lap nephrectomy has pain on/in the little scars? The one hurts and has a little bump on it too. It's been 6 months and just started about 2 weeks ago. Hurts when sitting get back it's the one just below my rib. I'll ask Dr in two weeks. I'm going for my first 6 month mri follow up…
-
Partial mri?
Anyone ever heard of this? I had my first 6 month followup today at the scan center. Got the disk, went home and noticed it says "partial"MRI on the disk label. Last one I had before my surgery didn't say that. By the time I got home Dr office was closed to ask about it. Did a quick Google search and don't see anything…
-
Questions
Hi everyone. New to boards and wondering if I should worry about MRI results. First off I have Polycystic Kidney Disease stage 3B, dx when I was 30. I also have cysts in the liver. I'm curious about the size of the cyst because everything I read seems to say anything over 4cm should be removed. I can feel the cyst along…
-
I'm new with questions
Good Day to all, I am trying not to google but I just have so many questions. I am just looking for your thoughts on a few things. On 6/23/16 I have a total rt open radical nephrectomy. I'm from a smaller town and everything all happened so fast I'm just now putting things together. The surgeon did not remove the adrenal…
-
So tired...
Hi fellow friends! quick question...is it normal for so tired and have no energy after 4-5 after a partial neph? I mean I wake up and feel pretty good and then about half way through the day I am spent. I'm a teacher and start back to work in 2 weeks. A little nervous since I teach kiddos with special needs. They have…
-
Nephrectomy complete; waiting on next steps
Hello everyone, I am 29 years old and was diagnosed with Stage IV RCC in May after an ER visit discovered a 13 cm tumor. Had a radical nephrectomy in June - removed right kidney, right adrenal gland, some surrounding lymph nodes and part of my IVC. I am recovering pretty well from the neph and am having a CT, MRIs and a…
-
Hi Everyone
Its been awhile since I have been on here checking on everyone, but I have been praying for you all. I had colonscopy and EGD done in May and everthing looks ok had 5 polyps removed and all was adenomas pre cancerous polyps. SOme cell changes in stomach was found. Still no new biopsies on thryoid masses, but I go to new…
-
cryosurgery kidney cancer, pain, swelling 4 mos out
Husband had a 3sm mass attached to his kidney, had cryosurgery Sept 2014. Dr said to get all the margins he had to freeze part of the 12 rib. After much pain and swelling Dr. said he also got part of the nerve. Four months now and 4 doctors later he is still in pain and swelling. Everyone says the same about the swelling…
-
papillary kidney cancer.
hi......i am new in the group...... im am not so good writing,exuse me,im am from denmark,but i will try. it looks like everybody know eachothers here and writing to eachother....i hope some will write to me.. i was diagnosed last year at one month before i was 41 with kidney cancer,type papillary renal cell ,type 1.stage…
-
SBRT
I have conslulted with a local radiation oncologist regarding a 5.9cm x 3.5cm lesion on my right adrenal. He assured me that he could treat the area with a 60-70% local control rate. If there is a reccurance in the same lesion can it be followed up with more sbrt, rfa or cryo? Also, my oncologist at the U of C stated that…
-
Bad blood
It's been a while I've been here.....that's what happens when you live with a RCC partner that acts like an ostrich :-/. So the summary.....RCC (stage 3, grade 2) and total nephrectomy end of June 2015. NED in October 15 and April 16. However, in April 16 he had a GFR of 62, so urologist recommended a check. Now in July…
-
Stent to help cough
Hope to start my new chemo, Inylta, on friday. Had CAT scan last week and Sutent not working. They found that here was some fluid on my left lungs and they hve to watch it ???????? I have a tumor in my wind pipe and last March had 15 radiation treatments to shrink it but it did not help. I have had a constant.dry cough…
-
Scatterbrained
Hi everyone, I'm 5 weeks out as of tomorrow and I am finally out and about doing more things. Still using the auto carts in the stores when I start feeling tired. I do have a question though. I feel like I forget things easily. Someone may tell me something in the morning and by later in the day I totally forgot what they…
-
What does the future hold?
The good: In 6 days I will be a 73 years young going on 74. Nine days later I will be 14 years NED going on 15. The uncertain: I am going Thursday for a PSA and other bloodwork follow up from my visit 3 weeks ago. According to the Prostate CSN discussion board I am probably looking at a Prostate Biopsy The good: I already…
-
Almost 1 year since radical and???
New to the board and think its great that it is available. August will be 1 year since I had my radical due to cancer. Still clear to date which is great but not have kidney function issues with the remaining kidney that the nephrologist cant quite figure out but here is my real question. Since I have had the surgery I…
-
NED at the 3 year mark!
I had a CT scan yesterday, 7/7. Just received a phone call from my surgeon. Results are NED!! This is the first time he's phoned me himself. He emphasized how the 3 year mark is a milestone. I am very, very blessed and appreciative of the support of fellow club members. God Bless all of you! Izzy
-
Fitting back into clothes
Hey everyone! Im now 4 weeks +1 day from my surgery. I'm still pretty swollen from my surgery and can't fit into any of my clothes yet. I'm wondering how long it took for you to be able to wear pre surgery clothes comfortably? I had a radical nephectomy of my left kidney if that helps. Kerry
-
6 Month Post-op scan tomorrow
Hi all, The last 6 months since my partial nephrectomy have flown by and it is time for my CT scan and check up with my surgeon at Moffitt Cancer Center. I am a little anxious even though my stage 1 diagnosis makes it highly unlikely to show any trouble. Praying for an all clear and an uneventful trip to Tampa! UPDATE: And…
-
how can i help? emotionally... homeopathically... finding the right intervention
My dad was just diagnosed with stage 4 papillary non clear cell carcinoma after having a nephrectomy several years ago and now it has returned in the other kidney and in other places as well. my dad is my idol, my hero, and someone who has inspired my values and beliefs my whole life! i would welcome any guidance, hope,…
-
Update
Where to begin? I had an MRI and a Ct scan last week. Tha thing in the brain has some small progression. The last MRI was in 2013 so there we are. My vision is still blurry. The thing shares space with my optic nerve. All the little things in the lungs and right kidney remain stable. Every so often I get a three to five…
-
3 weeks post op partial
good morning friends! I am 3 weeks out of my partial robotic neph. I'm still a llittle swollen on that side and find at times I hurt on my front and back on my left side. Is this normal? I healed up great, but was t sure that I'm still suppose to be swollen or hurting. It doesn't help that I have a bulging disc in my right…
-
Going go my doctor soon but questions
I have had flank pain for over a year, it's always been bilateral and never hurt at the same time. It can be dull and sometimes sharp. I also will get low back pain that comes and goes on both sides of the low back. Sometimes it also goes to upper back, also the joints in my arms,hands legs. I had an ultrasound done to see…