Kidney removal and Edoxaban.

[Pabba]

Hello everyone.

My name is Vivienne, I am 72 years old, I live in Derby, UK. In April this year I began having awful pain in my right side and down my right groin, also peeing blood. To cut a long and very painful story short it's now nearly August and I have had my right kidney removed due to cancer which has spread to my Vena Cava and my lungs. I have a very long wound which took 50 staples and extends from my left side right under my boob right across to my right side ending lower down my flank. They said I was nearly cut in half. The Thrombus in my IVC (inferior vena cava) the large vein from the heart feeding the lower body, still has the large blood clot and I have been put on a blood thinner tablet called Edoxaban. I am still waiting for an appointment for Oncology at the Royal Derby Hospital.

My problem is I have a permanent deep drawing pain in my lower abdomen which I am taking paracetamol and codeine for but they only make it just bareable. I am fairly certain I can tie it in to the Edoxaban pill as I changed taking it once from morning to evening and the pain was much less for a short time and then came back once the new regime continued. The number one side effect listed for one in ten people is, Abdominal pain, I suspect due to a low grade intestinal or bowel bleed as my poo was very dark brown. My GP has lowered the dose from 60mg one a day to 30mg one a day and this reduced the pain a little and lightened my poo colour, but the nagging abdo pain persists and it's relentless.

My question is, is there anyone out there who has had a cancerous kidney removed and if so what are your experiences regarding post op pain and specifically anyone with experience of the drug Edoxaban.

I would love to hear from you, thank you.

Vivienne.

[MAS_Nurse]

Hi Pabba,

Thank you for your post and welcome to our community. I am so sorry that you have had such a difficult time. Your doctors sound like they have really been very supportive and efficient in diagnosing and treating your renal cancer. Post-op pain after major abdominal surgery can be intense, are you on adequate pain relief? As you are aware, where there are secondaries, it is possible that it may have spread to other organs. I presume that your medical team have suggested chemo and radiotherapy, and are monitoring your abdominal pain to make sure it isn't something more sinister? Are you getting support from any of the UK cancer charities such as:

Macmillen: Cancer Support - Renal Cancer: macmillan.org.uk/informatio...

Kidney Research UK: kidneyresearchuk.org/health...

Kidney Cancer UK: kcuk.org.uk/

Kidney Cancer Support Network UK: kcsn.org.uk/

NHS UK: nhs.uk/conditions/kidney-ca...

Edoxaban can have abdo pain as a common side effect. Here is some more information:

Medicines Compendium: medicines.org.uk/emc/files/...

Do take care, we are here for each other and offer a listening ear, even if we don't have all the answers.

Best wishes,

MAS Nurse and Moderator

[Pabba in reply to MAS_Nurse]

Thank you very much for your reply, much appreciated. I have not seen or have even yet had an appointment for Oncology. I would have expected to have been seen before now, it’s been 10 weeks post op. I was sent from Derby to Leicester general hospital for the op as they had surgeons more experienced in my cancer. I believe a lack of communication between the two hospitals could be causing delays. I had to ask to see my GP urgently ref my abdo pain and then the next day I received a blood test form in the post, kidney function, liver function and u&e. I would have thought that these tests should have been done soon after I was started on Edoxaban not after 10 weeks! I am disenchanted to say the least, I did expect better timely support.

Thanks again.

[Faz2Baz in reply to Pabba]

So sorry you are having a rough time, I had my left kidney out many years ago but it wasn't cancer related. I have CKD. It sounds as though you need an appointment with the Oncologist urgently, and do hope you get to see someone soon, hope the pain is improving.Take care, kind regards Janx

[Pabba in reply to Faz2Baz]

Thank Jan, one day at a time eh. X

[RickHow]

Hi. I had one kidney removed in mid 2017. It was cancer. At the time they thought it had not spread. But here I am in 2019 and it has spread to various bones in my body. About the operation and recovery. My operation was slightly different than yours. You had a "typical" removal. Thus the large scar, etc. I had laparoscopy . This leaves two very small incisions on the front. But inside all is the same. I was given no special medications after the surgery. But the recovery had difficulties. I had night sweats almost every night for the first 2 or 3 weeks. I had pain (sharp) way down, almost in the groin area on one side. Severe abdominal pain. So much so my doctors sent me for scans, comprehensive blood, urine and even stool tests. Nothing abnormal was found. They suspected some kind of infection. After 2 weeks or so, it started to get better. Most problematic for me was movement. It was very painful to get up out of a chair. To find comfort in bed as nearly impossible, especially to get in and out of bed. But after the first 2 weeks, each day got better and better. Do not get me wrong. It was 4 to 6 weeks before I started to feel more normal. Then I was able to at least walk down the block and back. Simply put, it takes time. I'm sure, dude to your very invasive surgery it will take you longer. I was 67 at time of my operation. Since then I have had spinal fusion surgery, hip replacement, 2 different periods of radiation. I can honestly say that the best thing for recovering from these surgeries is NOT medications. It is attitude. The drug you take, as you know, is a blood thinner, so not sure this would cause this pain. For me I was just given a full aspirin a day for 2 weeks.

[Pabba in reply to RickHow]

Thanks for your reply Rick, so sorry for your not so good prognosis. Sounds like you have been having a tough time of it. Well it’s been 10 weeks post op for me now and still no sign of an Oncology appointment. I’m still getting pains in my lower back that come through to my lower tummy. I wish you well and as you say, all we can do is try to keep a positive attitude.

[RickHow in reply to Pabba]

Waiting to see the different doctors is the hardest part. My experience of waiting is like yours. Just to get an appointment!! I wanted to yell out the window "hey they think I have cancer, waiting 4 weeks to see an oncologist is unacceptable". I will tell you not to think everything is cancer. Such as the pain you describe. I had SEVEN locations of my cancer. 2 in spine, 4 in pelvis, 1 in femur. The spine actually almost entirely ate 2 entire vertebrae. And I never felt any pain! The one in femur was huge (had to replace hip). And I never felt any pain. 2 of the 4 in pelvis were VERY small. They caused mild pain that lasted for weeks which let me to the doctor and a scan revealed everything. So try not assume the worst about your pain. Keep us informed.