Kidney cancer

Hi jk131,

Welcome to the club that no-one ever wanted to join.

Sorry that this is going to be a long post, but I get the feeling that you are pretty much starting from square one and are really looking for information.

My wife was diagnosed in May 2012 with primary kidney cancer and it has metastasized to spine and paratracheal nodes. After many, many different drugs (Sorafnib, Ipinimumab, Nivolumab, Sutent, Axitinib to name a few), she is now on one called Cabozantinib which is also a targeted chemotherapy.

She was originally on 60mg daily but this was dropped to 40mg daily after some disasterous side effects (hypercalcemia, dehydration, high blood pressure) from the 60mg dose.

The 40mg daily dose was tolerated for several months but the side effects accumulated over time until they became too much for Margaret. They put her on a split cycle (initially 4 weeks on the drug and 1 week off and then this was changed to 3 on/1 off and then to 3 on/ 1.5 off. 

Eventually the side effects accumulated again so her dosage was dropped to 20mg daily and this is where we are now. 20mg daily is sufficient to provide a therapeutic dose, it's just a question of whether it's enough of a dose to be effective. And some of the side effects are noticeably diminshed but some new ones have appeared at this dosage.

Cabozantinib is somewhat similar to Fotivda in that they are both TK (tyrosine kinases) inhibitors. Their main purpose, if my laymans brain has comprehended much the oncologist has told me, is to switch off certain proteins in the cancer cells that can affect the supply of nutrients to the tumor, basically trying to starve it to death.

Googling both drugs shows they have similar, but not quite the same, side effects. The most common side effects that are common to both drugs are;

• Fatigue
• Diarrhoea 
• Dry throat
• Constipation (This isn't listed as a side effect of Fotivda but IT WILL HAPPEN)

Fatigue seems to be a given no matter what cancer drug you're on.

When they are fatigued, all they will want to do is lie around and sleep. Let them. BUT it is very important that they get 5-10 minutes of sunshine a day for vitamin D. Vitamin D is vital and a lack of vitamin D can report as hair loss, muscle pain, bone pain, depression, loss of calcium uptake to the bones, etc.

Even if he's just sitting down outside, 5-10 minutes a day is important

Diarrhoea is indicated for around 25% of patients according to Fotivda's website. Where a drug company says a 25% chance of a side effect you can realistically double that percentage. 

Diarrhoea will happen. It may be mild, it may be horrific. Your husband may be able to exert some control over it or it could be spontaneous (fatigue and a drug induced fogginess can contribute to a lack of control). It is critical that fluids are kept up to him. Increase fibre in his diet.

Depending on the severity, this can affect their mental and emotional well being. When it is at its worst, it was really getting Margaret down and she was withdrawing from everyone and everything - understable to a certain extent. Keep you eye on his moods if it is going on for an extended period (more than 4-5 days).

Although constipation isn't listed as a side effect of Fotivda, your husband will have undoubtedly been prescribed some pain relief and this is where the constipation comes from. Codiene, Oxycontin, Oxynorm, Methadone, in fact all of the opiod type pain killers will cause constipation. Not can. Will. Treat all pain relief as a potential source of constipation.

Coloxyl with Senna will become your friend (and his). Constipation is horrible. If allowed to fully develop, it will produce stomach pain worse than childbirth (my wifes words not mine) and is very draining physically. This can exacerbate any existing fatigue. Again, fluids are critical.

Hypertension (elevated blood pressure) seems to be the biggest side effect from Fotivda but this is a relatively rare side effect for Cabozantinib.

Get yourself a blood pressure monitoring machine (Omron make the best ones, so I've been told). Take his blood pressure regularly and record it. Make this part of his morning routine.

If you are starting from square one, can I offer the following tips;

• Keep an accurate record of what drugs your husband is taking, the respective dosages and the frequency per day that he takes them
• Keep a log of his temperature, blood pressure, pain levels (how high out of a possible score of 10) and oxygen levels
• Keep a log of any breakthrough pain meds he takes (what drug, what dosage, how many, date and time)
• If you come across something that you don't understand, write it down for his next trip to the oncologist

Additionally;

• Don't let doctors intimidate you - if you don't understand what they say, ask for it in plain English
• At the end of the day 4 pounds and a medical degree still only gets you one pint. Your husband and you are the most important participants in this journey. Doctors, however qualified, are merely interested onlookers and get to live their normal lives when they go home
• Don't back down until you're satisfied with the answer
• All doctors are doing their best - some are just better than others at passing on information
• Make notes during each consultation (they don't all like this, but ....)
• Find a routine that is comfortable for both your husband and yourself
• Above all else - find some time each day for yourself. Carer burnout is very common and is dreadful to watch.
• It's OK to get angry, but get angry at cancer - the man you love is still in there behind the disease but it can make him act out of character
• It's OK to lose your shit every now and again, but if you do lose it, don't go looking for it again. Let it go. Take a big breath, make any needed apologies, pull the big girl panties up a bit higher and move on towards tomorrow

I did warn you it was going to be a long one. ;-)

I truly hope things go as well as they possibly can for your husband and yourself.

If you want/need any clarification on any of these points, or have any other questions, please don't hesitate to ask.

Peace,
Ewen :-)

Hello Ewen

Thank you so much for your reply. It is very much appreciated.

You are correct in thinking I wanted / needed information! 

It sounds like you have been on a very long journey and I must applaud your honesty and the support you have shown to your wife. It must have been a tough few years, but hey, you are still both here to tell the tale!

Unfortnatly my husband has been unwell for over a year now and it wasn’t until six weeks ago,  after his G.P ordered a CT Scan, that the diagnosis was made! So angry / upset that nothing was picked up before then. My husbands one and only other condition was Diabetes 2  which was well controlled. After initially losing a stone in weight ( this was not done deliberately) his diabetes G.P. was very pleased. He only saw this doctor once a year for his diabetes check up. He then saw his regular G.P regular as he continued to lose more weight, loss of appetite and feeling very tired. I believe they were checking for bowel cancer which of course showed nothing untoward and then perhaps it could have been a virus. Fast forward one year and it was time to see his diabetes G.P again. A week before this appointment he has his bloods and urine taken by the surgery nurse. Long story short his diabetes doctor was unhappy with the results and advised my husband to make a appointment with his general G.P. as he thought things  were not quite right. He was then booked in for a C.T. We were given the news the next day. What a shock, I do realise everybody with this diagnosis feels exactly the same way Shocked, numb, overwhelmed. I just feel one whole year was wasted. Sorry I am getting of point.

jim started fotivida 10 days ago, at the moment the fatigue is the most frustrating symptom. Before starting this drug he could take a nap in the afternoon, it’s not happening since starting this treatment. His mood was by this point very low anyway. His G.P. has prescribed both a antidepressants and he is also taking 1/2 a sleeping tablet. Which has helped with the night sleep regime, but is still struggling to take a nap throughout the day. We do try and go out for a little time everyday, although I know this sometimes takes great effort on his part. 

He was prescribed nausea and diarrhoea medication, so far these have not been needed. His symptoms at the moment are mostly  doable. It has already effected his voice, he has a very sore throat. I have also noticed the palms of his hands and sometimes his face are really red, not sure this is to do with hypercalcemia ? Some days he does not need to take Oxycodone, he was given oramorph but it did not help, in fact it made him feel worse. Yes you are correct the constipation is a problem. I tend to make fruit smoothies in the a.m. but the fibre is problematic. The G.P. luckily after a bit of nudging from myself agreed to prescribe Fortisip nutrition drinks. At least I know that he is getting some goodness that he so desperately needed. I am quite expecting things to change the longer this treatment continues, but you have made me aware there are other options if required! 

Reference the high blood presure. We were told that this can be a side effect. It is not easy as with Diabetes two it’s something Jim monitored periodically. We are unsure what those limits are while on this drug, we have a appointment with the oncology nurse tomorrow so this will be one of the things I will be mentioning along with a few other concerns! ( if time allows )

when we attended the first appointment which was in the assessment centre of our local hospital it was established through blood tests on the day that he was also suffering with Hypercalcemia, he was given a infusion of Zometa. He is also having another infusion after seeing the oncology nurse tomorrow. Is this usual ? He was given the first infusion before any drug treatment ? Everything gets so confusing. It’s all the buts and ifs at the moment, plus the uncertainty of where this diagnosis takes you ;) You have certainly helped greatly.

I will defnatly reread  your response whenever I need anything clarified. Thank you for your time and all the information you gave.

Best wishes to your wife and yourself. I wish you both happiness and health for the future.

Maureen

Hey Maureen,

Kidney cancer is an insidious bastard - there are no external signs that you may have it. The only real indicators are lower back pain and tiredness, and that's just described everybody over 40. Margaret's was found totally by accident. She had been hospitalized due to nausea arising from a small twist in the bowel. The scan they did on her stomach to find the twist just happened to catch the lower portion of her right kidney where the tumor had set up camp.

RE. the redness in his hands, this is most likely hand-foot syndrome (HFS) and is reasonably common in chemo patients. You may find the soles of his feet are red as well.

It presents as (at best) an annoying redness and some tenderness to the hands and feet to (at worst) sharp stabbing nerve pain in the hands and feet, sensitivity to the point of not being able to put feet on the ground or hold anything in their hands and blistering on the soles of the feet.

This can be managed by a combination of moisturizing (we tend to use urea free creams like MooGoo, UdderlySmooth), cold packs to the soles of the feet or the palms, elevating the feet or (if he gets the stabbing nerve pain) meds. Margaret is on 2BD 300mg Lyrica but she also has other nerve pain from the remants of her spinal tumor and the placement of the rods and bolts in her back.

If he gets the blistering on his feet - DO NOT "POP" THEM. Popping them increases the infection risk dramatically. These blisters can be huge and take forever to dissipate. Margarets biggest one was around 9cms round and 3.5 cms high and took 5.5 weeks to go down. They can make mobility a real problem. Her podiatrist gave us this this pad-like material made of felt and it has an adhesive layer so it can be stuck to the foot. We had to cut a doughnut shaped piece to surround but not touch her blister so she could walk without the blister actually touching the ground. Felt is the best thing as it remains cushioning for far, far longer before it compresses. Most foams compress to the point of uselessness in a few hours.

You said Jim monitors his blood sugars periodically. Given he has diabetes and is taking a drug known to raise blood pressure, I really think you should be checking this daily. When Margaret had steroid induced diabetes, we were told to check her blood pressure daily. You should talk to your GP, your Macmillans nurse or your oncologist about this and ask about recording his vitals and his meds. We found this was handy information if Margaret is hospitalized as the ER doctors got a pretty accurate picture of what she is taking and why she is taking each of them.

at the moment the fatigue is the most frustrating symptom. Before starting this drug he could take a nap in the afternoon, it’s not happening since starting this treatment. 

This is quite unusual if his fatigue has diminshed. Fatigue is almost a "given" with chemotherapy. You should discuss this with your doctors. 

I tend to make fruit smoothies in the a.m. but the fibre is problematic.

You can add Metamucil (or similar soluble fibre additive) to just about everything. We add it to Margs morning cereals, fruit juices, in muffins, etc. It does not colour the food or alter the taste.

that he was also suffering with Hypercalcemia, he was given a infusion of Zometa. He is also having another infusion after seeing the oncology nurse tomorrow. Is this usual ?

Hypercalcemia is generally treated by a course of drugs (commonly bisphosphonates) not just a single treatment. Marg had weekly bisphosphonates injections for 4 weeks. You should also strictly reduce all dairy foods or foods high in calcium. Again, discuss this with your doctors.

Please bear in mind that everything I've written is done from the perspective of the Australian medical system and some drugs may not be available or are strictly controlled where you are. Similarly, treatments and symptom management methods may vary to your local practices. 

What doesn't vary is that you need to record things and ask questions (and write down the answers). Keep a journal of everything and take it with you to all appointments. This way, you don't forget what questions you want asked and you can jot down the answers. Your doctors can also review his vitals and his breakthrough usage.

Hang in there sweetheart.

Peace,
Ewen :-)

Hi Maureen

It's possible that Jim's current fatigue is the Zometa. My first few infusions were quite hard work. The side effects included quite significant bone pain and extreme fatigue lasting several days. It was a bit like flu. I have 4 weekly infusions and I have no side effects at all now and haven't from about the fifth / sixth infusion. Each one got a bit better until I could manage them easily. Don't worry about the speed at which these infusions have been administered and that they're coming before the chemo. They're effectively for a different purpose.

Hands and feet, I have Moo cream, but the best I have found is Oilatum, it soothed both incredibly quickly. Great big pot cheap as chips from Boots.

I'm on 600 mg Pazopanib, so another targeted drug. I started on 400mg, tolerated that, went up to 600mg, tolerated that, went up to 800mg, tried for 6 months on that but it was too much. I lost over a stone and a half in that period and my weight hadn't stabilised, so I came back down to 600mg and my weight has stabilised well. I'm not very big so continued loss would have been a problem. I think they all have similar side effects. My blood pressure is higher and it's being managed with Ramipril so it's causing me no problems. My thyroid is out so I'm on Levothyroxine for that, that also causes fatigue when it goes out of range so worth knowing. I'm on my third anti nausea drug as neither of the first two worked well for me. Don't be afraid to ask for alternatives if the side effects aren't well managed. Diarrhoea is likely a given at some point and it becomes a balancing act between that and the loperimide. I find just one tablet after the first episode can stabilise me for several days.

I lost my taste initially, but that came back after a week's treatment break when I was about 4 months in and my hands and feet settled well around the same time. I just get very occasional outbreaks. I struggle a bit with body temperature. I get very cold very easily but I also experience hot flushes - basically like menopause.

Food wise - because nausea had been a big issue for me I've eaten lots of plain food, when normally people suggest more flavours. If I've felt really unwell and not wanted to eat, smoothies, melon and pineapple and ice cream have always been good a kickstarting me into something more substantial. I also struggle with the smell of cooking in the house - so the extractor fan on  more than normal helps - and washing the dishes immediately. It's the stupid small things that you don't even think about that can actually help to make a difference.

My wbc has only been low once, which triggered the break. I've also had a small bowel bleed which triggered my 2nd week's break and I'm currently on a 2 week break to settle a bowel inflammation. 

You just have to monitor and manage the side effects. Jim is unlikely to get all of them, and they change over time, so you start with something and that might go away, but you get something else instead. Each month I have to tell my oncologist or nurse which side effects I've had so they can monitor them too.

I've found that calling / e-mailing my specialist nurses is the easiest way to get immediate help and answers to anything. They really are fantastic and I would make them your hospital support network.

I've worked full time until very recently and now cutting back. I'm self employed so that has helped as I've juggled the hours so they work for me. I know for a fact I would have struggled hold down a 9-5 - that's a very different beast.

I hope that's useful, but if I can answer anything else I definitely will.

Wishing you both all the very best of luck with the treatment

Hi Ewen

Thank you for your reply, but apologies for not getting back to you sooner.

I do hope Margaret is doing okay and your managing at least to have some good days. She sounds like she is a very lucky ladie to have your support.

It was very helpful in relpy to some of my questions. Since posting we have seen the oncology nurse. She was very pleased with Jim’s latest blood results. We were also given udderly smooth for feet, body etc.

At the same appointment he was also given the Zomitia infusion, which are going to be a monthly iv.

Referance the fatigue, yes it was / is a problem. But the Target Therapy drug seemed to stop him being able to sleep. Three weeks in and and as you rightly say he now can’t keep awake, although a 1/2 sleeping tablet is still required at night. I think maybe due to his mind working overtime. 

I also keep a list of times/ dosages of medication and yes he now has to monitor his blood pressure daily. Because constipation was a issue, we are now using panadol for breakthrough pain. He is taking Oxycodone long realease in tablet form, we have got the liquid as well in case panadol is not enough. Fortunately at the moment adding  panadol is working. So he is not getting quite so constipated. 

  I am rather concerned at the moment that his hip / leg pain is now effecting his knee, which in turn has made walking difficult again.He did seem to improve after radiotherapy for this issue, but unfortunately it seems to have returned with a vengeance. He stops  Fotivida  on Sunday for a one week break.We then see the consultant a week this Friday. 

Best Wishes

Maureen

Hi Jo

Thanks for taking the time to reply.

I think you maybe correct in saying that the Zomitia infusion could be the side effects Jim is now experiencing. Since last Wednesday his pain seems to have worsened, especially hip, leg and now knee pain. Although I am still concerned that the radiotherapy has not been successful for that issue. He had small lesions on the ball of his hip joint, thus not enabling him to walk very well. This pain returned again last Friday ( 2 days after the Zomitia infusion ) so hopefully you are right in thinking it could be the after effects he is feeling now. I hope so. 

This is the third week of Fotivida, next week he takes a one week break. Then restarts the next cycle. To be honest he has has not suffered to many side effects. I am aware this could change as the cycle increases. He is completely fatigued, which for him is so frustrating as he has never been one to sit around. As of yet no sickness or diarrhoea ( the complete opposite) A slightly redness on the inside of lips and sometimes he described it as his teeth were on edge. His blood pressure did go higher than it has been, but the hospital and G.P. were not overly concerned about this. He has diabetes type two, but that condition is very well controlled.

Regarding the being hot and cold feeling, it’s exactly the same for Jim! It used to be me that liked the heating up high, how the tables have turned. It sometimes feels like I am living in a furnace.LOL Other times it’s like living in the Antarctic!! 

I really thought the idea of e.mailing was a very good idea. I do have a emergency phone number to call our local hostpital if there is anything I am concerned about. What that usually means is a nurse relays the problem to a doctor who then gives advise on the course of action to take. I am awaiting a appointment with a dietitian, I think this could be quite a positive appointment. We were also told that McMillan would be in contact, as of yet I have heard nothing from them. Such a rollercoaster at the moment.

I did read your profile, it seems you have coped very well. Was there a family history of Kidney disease, you are still very young to have these health issues. By what I have read it mostly effects  men / older men that get diagnosed with this condition. However did you manage to work full time, it must have been very hard for you. Pleased  that you are now doing part time. It’s certainly a wake up call to make you realise life is so precious. 

Thanks again it has been very good to hear other people’s journeys.

All the best

Maureen 

Cts. 

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