Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

Wondering whether to start immunotherapy or not...

samhal
Posted by

Hi everyone and I am glad to have found this forum.

Male, 68 yrs old now. Almost 3 years ago I have had my rt kidney removed because of a large RCC. Since then, I have had two ablations done on my Lt kid. after which I had been informed of 2 more tumors on this kid + one very small met on my lung and one inside my abdomen. Have refused any type of treatment but have changed my diet completely to veg. and have been taking extensive acupuncture and many herbs. Unfortunately, pet scan recently has shown many other mets in various locations. The one in the lung had grown quite a bit, there is a large on on my ilio-sacral bone which had been broken as a result, and another one on my mandible, protruding out like a small mound. The thing is that despite all that I am managing my pain quite well esp. with my mandible issue, being able to eat and all  - except for the ugly looks it had given my otherwise nice face features... I have pain if I walk too much, however I can still ride my mtn. bikes now and then without difficulties. I have been reading a lot about the immuno and targeted therapy which the oncologist here had advised, and, tell the truth, am terrified of these side effects and reactions. So here is the thing I would extremely like to hear your opinions about: in view of my inevitable poor prognosis, should I keep living as long as I may without the suggested therapy but (so far) with a very acceptable QOL, or go for the not-very-high odds of some pause or halt in the disease progress and (almost) undoubtedly worsen my QOL..?? As said, will appreciate an contribution on this from your personal experience. All the best and wishes of full recovery to all of you.

buttercup01
Posted by

Hi ,

Personally I've been very fortunate with my meds (Pazopanib, a targeted therapy). After a nephrectomy in 2005, I started on meds following cyberknife for a solitary brain met in 2013. There was then a treatment break of 3.5 years.

Only just  gone back on meds last month due to a new lesion plus growth of a long standing lung nodule.

There are a number of folk in this group who've been living with kidney cancer for some years, some also on Pazopanib. It's a slow grower compared to other cancers. Also there are new drugs being developed all the time, for instance my oncologist said there were 3 oral drugs plus an IV one ( immunotherapy)  they could put me on after Pazopanib- if need be.

The side effects can be grotty but manageable. The one I mainly have probs with is everything  tasting like cardboard every 3 or 4 months. I simplyd deal with this  by having a week' s break then going back on the tabs. This is fine with my oncologist.

I take a preventative anti-sickness tab with my Pazopanib every night n an antidiarrhoeal as n when needed.

Other side effects include hair changes. Mine's currently grey, thick n curly - it'll change to bright white n straight.

Hope that's enough detail to help u decide? Dare say others will give u their twopennorth.

It sounds very much like you'd prefer to deal with it as naturally as possible .  

I can't comment on that as it's against the guidelines.

I'll just finish by saying I've been a veggie since 1976 n also have a lot of support - prayers etc. Every little ( or lot in my case !) helps ..

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Gragon
Posted by

Hi ,

When I was first advised that my cancer had spread I foolishly googled the life expectancy statistics and found that most people died within 18 months and there was only a 5% chance of surviving 5 years.  What I was not aware of at the time was, because they were so new, the treatments that were now being offered were not included in the statistics.

If you look at my profile you will see that I too am on Pazopanib, a targeted biological therapy.  The oncologist insisted that I read all the side effects as because I am on a trial I am required to report all side effects and the list is scary.  However, my experience was that the ones I experienced were all manageable and that the ones I did get were comparatively mild.

My disease has progressed a little since I started in that I have some new tumours but the initial ones are pretty stable and don't change much.

An important thing to remember is that saying that you will take a specific treatment does not mean that you have to keep on taking it if it is impacting significantly on your quality of life.  If it gets too much tell your oncologist that you want to stop that one and perhaps try something else.  I am aware of a very few people who have suffered irreversible side effects with treatment but these do not appear to be very frequent and perhaps if this does concern you then discuss this specifically with your oncologist.

If the Pazopanib does stop working for me then I will not hesitate to ask my oncologist what do I take next and feel fortunate that in the years since I was diagnosed that there are now so many options available.

Wishing you all the best,

Gragon x

samhal
Posted by

Thank you guys for your input, it is indeed reassuring. Has any of you experienced a total disappearance of tumors/mets, or at least a significant reduction in size as an outcome of the onc. treatments? Has any of you experienced significant alleviation of pain and/or symptoms related directly to the tumors as a result of the treatment?

How likely is this going to happen and after how long since the initiation of the onc. treatment?

Thanks again.

buttercup01
Posted by

Hi . No tbh I haven't had any reductions in size nor total disappearance in mets. But they've only  grown basically in mms in the last 10 years. A couple have grown in cms recently but then I've been on a treatment break ..

I don't get pain ( touchwood) with my cancer.

I did get headaches with the brain met but not after having the cyberknife treatment. Also, I get migraines, so hard to tell what caused what!

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Jo300
Posted by

Hi Samhal

I'm also on Pazopanib and have been for three years. Immunology is currently my third line of treatment, once this and the next stop working - and I'll be jumping at the opportunity to take it. While kidney cancer might be slow growing - it's cancer nevertheless - and as we're stage 4 - I'm not taking any chances at all.

My main side effects are sickness and diarrhea and I seem to suffer from this more than might have been expected. I'm currently on a two week break to settle my stomach and bowel. My consultant is considering the possibility of dropping my dose from 600mg to 400mg and we'll have a chat about it when I go back after the break. I'm already feeling hugely better after just three days off.

I'd say my QOL is pretty damn good. 

I did have extreme pain in my main met when I was initially diagnosed stage 4. It's in my breastbone and had broken through - so  I was effectively living with a fracture. I was due to have radiation on Christmas Eve - 6 weeks after my treatment started - but the pain had diminished so significantly that the radiologist suggested to delay it - and I ended up not needing it at all.

Personally I wouldn't hesitate to try anything. As Gragon says, if it doesn't suit - you can come off it. The cancer is the life sentence - not the treatment.

Good luck with your decision.

Jo
x
buttercup01
Posted by

Hi

'm  lucky I don't get nausea/ sickness, courtesy of an anti - emetic called Levomepromazine. It isn't licensed over here as an anti- emetic but can be prescribed on a named patient basis. (Other anti - sickness meds don't work for me)

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Jo300
Posted by

Oh - interesting I haven't tried that one yet. I'm on metoclopramide, 4th different one. The problem is it's used to empty the stomach - and it's not food that usually triggers me - it's movement - so when I get up in the morning - or I over exert.

Jo
x
samhal
Posted by

Very informative and contributing all your replies, thanks a lot.

I wonder if any of you have tried herbal supplements in order to alleviate the cytotoxicity of the treatment. In Israel, where I am from, it has been quite prevalent in recent years to use the herb ephedra in order to mitigate the side effects of chemo or biologic treatments. This herb, for instance, has a variant in Israel which is completely free of ephedrine, Ephedra foeminea, hence does not pose a threat to anybody's health and well being. Based on many people's testimonials, as well as some clinical trials in vitro, it has the ability to mitigate the cytotoxicity of conventional therapeutics.  Moreover, it grows wild all over the country and very easy to discern and pick. Also Chinese medicine has some patent formulae of herbs made into pills that are very rife in China or Chinese communities as an effective adjuvant to various chemo-therapies. So, if someone here did use such modalities, it will be very interesting to hear your experience.

Gragon
Posted by

Hi ,

I have no doubt that in some cases herbal supplements can be beneficial but my concern is always the lack of research into these adjunctive treatments.  I have attached a link to a recent BBC news story, click here, which argues that some of them are actually counter productive.  However, even this article has only looked at certain cancers and I would imagine it is limited in the number of different treatments it has been researched again.

Whilst the lack of research may have been because the big pharmaceutical companies might find it difficult to make money out of something that you can grow in your garden I think that as the active ingredients often need separating from the other chemicals in the plants they would find a way and as such I don't personally accept this argument.

I also accept that traditional Chinese medicine may hold some secrets but as this traditional medicine also utilises products such as bear bile to increase virility, a claim that I understand has been totally disproved, I am not ready to commit to such an approach totally.  In the UK I understand that even as late as after the second world war doctors were recommending the smoking of medicated cigarettes, containing tobacco with other chemicals, to ease the symptoms of asthma to tradition does not always mean that there it true understanding.

I actually favour large scale research, possibly government backed into possible herbal solutions.  I am not an advocate into cannabis use, if fact I tend to argue against it, but I do feel that a trick has been missed when there has been so much cannabis use in the past 50 years and so little research into it.  I do feel that the concern that some people wanted it legalised so that they could get high blinded a lot of people to the genuine possibility that it might have medicinal benefits.

I would personally be quite happy to take a herbal supplement if I thought it would assist me and indeed I quite happily drink ginger tea and try to regularly eat meals with turmeric in it.  However, if it was something outside of my normal diet or provided in a concentrated form I think I would check with my oncologist to get his thoughts on the matter.

One thing that I keep returning to was something from watching a programme on tv exploring "detox" diets.  The doctor on the programme said that your body is actually designed to detox itself and your liver and kidneys do a major part of this job.  I personally am only short of half a kidney but the results from my blood tests consistently show that the one and a half I have left are functioning well and as such they are doing what they are intended to do.  As such if I want to detox I simply drink some extra water to help flush anything through my system without adding anything that might cause my organs to have to filter or breakdown.

I think that it often comes down to what you are happy doing and if you feel it gives you a better quality of life then I think that this is something we are all seeking.

All the best,

Gragon x

buttercup01
Posted by

- just to warn u, Levomepromazine  is used to treat schizophrenia n can make u sleepy.

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Jo300
Posted by

- oh no - I'm already bad enough lol!!

Jo
x
samhal
Posted by

Gragon, you have indeed some strong points mentioned above and, as said, everyone at the end, does what suits them better and their intuition or beliefs. Yet, there is definitely accumulated evidence in regards to many herbs or acupuncture, evidence that had survived many centuries and is still practiced all over the world with remarkable results. That said, it does not underestimate the validity of modern science research and evidence of its own. However, without thinking too hard, I could instinctively fire out few very major concepts and medications developed by conventional medicine in the last few decades, that only the victims of those can testify to their disastrous outcome. Those medications/concepts etc., have also been subject to thorough investigation at the time, all with double-blind testing and laboratory finding. Thus, having a scientific approval or signature does not necessarily make them superior to procedures that had endured the test of time and generations. Learning from all available sources of knowledge as well as keeping an open mind is crucial IMO when you have suddenly confronted the greatest health issue of your entire life...   :-((  

Jo300
Posted by

Hi Samhal

I'm in total agreement with Gragon on this. Maybe it's a bit of a cultural thing?

The one thing that I did use (which won't be of any benefit to you) was black cohosh as I was getting terrible hot flushes from an enforced menopause. It worked beautifully, but when I advised my oncologist, I was told that I'd need to stop using it as no research had been done into whether it could have contraindications or not..

I think if you take anything which hasn't been scientifically reviewed in conjunction with the treatment, you do so at your own risk.

Jo
x
samhal
Posted by

I think if you take anything which hasn't been scientifically reviewed in conjunction with the treatment, you do so at your own risk.

Well, some say that eventually most of your life actions is at your own risk...