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Sutent & High Blood Pressure

TerriNick
Posts: 43
Joined: Mar 2013

My partner was diagnosed with RCC in November 2012. Unfortunately it had spread and there was a small nodule in the lung and a patch on the pelvic bone. Luckily though the main tumour was operable so on 7 December he had a radical nephrectomy and his left kidney was removed via keyhole. In January he was started on Sutent 50mg for the mets. After only 4 days his blood pressure (diastolic) was rising and he was put on Adlodipine 5mg. This BP med made him feel really really bad and the side effects were so awful that at Day 14 on Sutent they took him off the Sutent for 7 days which has really scared him and made him worried about the progression of the cancer mets.

We are now in Month 2 - Day 17. His BP started to rise again and this time they put him on Felodipine 5mg which he is tolerating well - hardly any side effects and it keeps his BP in good range during the day but come 7-8pm at night the diastolic is again rising and getting dangerously high. So on Wednesday of this week they also put him on Ramipril 2.5mg to take at night but they don't seem to work too well. 

Not only that but his taste changes are not too bad when he is taking Sutent and Felodipine, but when you add the Ramipril to the mix his taste goes out of the window and yesterday and today he says that nothing tastes good or right at all and he is having to force the food down. It is only since he started taking the Ramipril that the taste has really gone downhill.

Does anyone else have these problems? And can anyone suggest an alternative BP med to Ramipril that might work better please?

He is doing so well on the Sutent and the only real side effect for him seems to be the rise in BP. He gets a bit of acid reflux and a minor taste difference but that's it really. If he didn't have to take the Ramipril which seems to be the problem medication I think he would be doing even better.

He has his first scan on 20 of this month and he is getting real anxious about it as you can imagine. And the worst is that there is nothing that I can do or say that will make it any better for him. As he said ... it's scary knowing that in 3 weeks they will tell me if I have a chance of living or whether I am going to die soon. 

Any help or advice you can give on the BP meds would be so gratefully recieved.

icemantoo's picture
icemantoo
Posts: 1532
Joined: Jan 2010

Terri,

There are many BP medicines out their, but at least for me it would be inappropriate to play Dr., only to comment that Felodipine is one of the Blood Pressure medicines I am on.

What I do suggest is that you see a Nephrologist. Besides being Kidney Doctors they specialize in hypertension. Hypertension contributes to Kidney disease as does getting older and losing a kidney. I have found that my Nephrologist is much more concerned and proactive about my hypertension than my family doctor ever was.

While his scan may or not be perfect it does not sound to me that your partner is going to die soon if it is not as there are many members doing fine with sutent and other drugs that started with alot more baggage than your partner.

You have to take the attitude that although thing are not perfect you sre going to do what  you have to do to beat RCC  so you can help similarly situated newbies down the road.

 

Icemantoo

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Welcome Terri. Can you tell us your partner's age and his general health; also details of his pathology report - Stage, Grade, size of tumor, histology (sub-type of kidney cancer - commonest is called "clear cell" or "conventional"?

I had a nephrectomy almost exactly a year before him and I'm now on a drug similar to Sutent, called Votrient, which, like Sutent, causes a rise in BP, which is a good indication that the drug is working.

I was also started on Amlodipine which I believe to be a bad drug which I would like to see taken off the market, although it is very widely prescribed (for, I am convinced, no justifiable reason).   It was not very effective in controlling my BP and in due course it precipitated an allergic reaction which could have killed me. 

Most patients who have hypertension can have it managed satisfactorily but it usually requires several different meds taken at the same time (not necessarily at the same time of day, though) and usually from different groups of drugs which act in different ways to reduce BP.  Two different drugs, at lower doses are better than one drug at max dose.  You are doing Ok on felodipine which is a calcium channel bolcker like amlodipine, so that's fine.  Your GP probably has a lot of experience treating hypertension and can easily find a substitute for the Ramipril which is giving you the problems.  That is what's known as an ACE inhibitor - a good class of drugs for KC patients - and there are plenty of others to try to find one that agrees with you.  I'm on 2.5 mg daily of one called lisinopril, which I take at night coupled with 2.5 mg daily of a diuretic, bendroflumethiazide.   After my bad experience with amlodipine, I'm fine now, with much better BP control.

If your partner is doing so well on Sutent, I think he doesn't need to worry so much, once his BP meds are changed to a more tolerable selection.  Do you know how high his diastolic (and systolic) BP was getting?   i wonder why he wasn't kept on the Sutent and just switched from amlodipine to something better.

By the way, lately I was having the same problems of lost taste, a bit of dyspepsia and heartburn but on the new BP med mix I seem to have had relief from these side-effects for a few days now.   I'm sure his docs can soon sort out a replacement for Ramipril and let him get on with benefiting from the Sutent.

TerriNick
Posts: 43
Joined: Mar 2013

Hi Texas-Wedge

My partner is 58. Stage 3 Clear Cell Renal Carcinoma, Grade 4. Caught very early it seems. Had a cough he couldn't shift, CT showed fluid on left lung and luckily the CT technician scanned just under the lung as well and caught something on the kidney. We were given the option of partial or full nephrectomy and went for the full option. The surgery was on 7 December and went well. Pathology came back with all lymph nodes clear and he was started on Sutent about 15 Jan 2013.

The only really bad side effect is the high blood pressure - his consultant wants the diastolic kept under 95 but it is most of the time between 97 and 104 with occasional jumps to 113-116. Last month he did have a really sore mouth and sores on his tongue but taking Vitamin B Strong Compound three times a day this month has stopped that from happening.

Since going onto Ramipril 2.5mg he has nausea, rash, metallic/salty taste in his mouth, taste decreases on all food and drink and this morning he took his Sunitinib and an hour later was vomiting (another side effect of the Ramipril).

We went to see the GP today (our term for family doctor in the UK) who was basically useless. We were told to take what the specialist told us with a 'pinch of salt' when it came to diastolic levels and that he should just stay on the Ramipril and keep an eye on the blood pressure. I was furious. We are now waiting for a call from his Renal Oncology Consultant to sort this out.

He is getting really down with these side effects but I did tell him that you and research studies have shown that raised blood pressure means Sunitinib is doing its job and that cheered him up, thank you.

Terri

 

TerriNick
Posts: 43
Joined: Mar 2013

Hi Texas-Wedge

My partner is 58. Stage 3 Clear Cell Renal Carcinoma, Grade 4. Caught very early it seems. Had a cough he couldn't shift, CT showed fluid on left lung and luckily the CT technician scanned just under the lung as well and caught something on the kidney. We were given the option of partial or full nephrectomy and went for the full option. The surgery was on 7 December and went well. Pathology came back with all lymph nodes clear and he was started on Sutent about 15 Jan 2013.

The only really bad side effect is the high blood pressure - his consultant wants the diastolic kept under 95 but it is most of the time between 97 and 104 with occasional jumps to 113-116. Last month he did have a really sore mouth and sores on his tongue but taking Vitamin B Strong Compound three times a day this month has stopped that from happening.

Since going onto Ramipril 2.5mg he has nausea, rash, metallic/salty taste in his mouth, taste decreases on all food and drink and this morning he took his Sunitinib and an hour later was vomiting (another side effect of the Ramipril).

We went to see the GP today (our term for family doctor in the UK) who was basically useless. We were told to take what the specialist told us with a 'pinch of salt' when it came to diastolic levels and that he should just stay on the Ramipril and keep an eye on the blood pressure. I was furious. We are now waiting for a call from his Renal Oncology Consultant to sort this out.

He is getting really down with these side effects but I did tell him that you and research studies have shown that raised blood pressure means Sunitinib is doing its job and that cheered him up, thank you.

Terri

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Thanks for that info Terri but I'm sorry to hear he's still feeling so down. I'm sure that will pass as his medication regimen is sorted out and all settles down.  We're just back from a re-assuring visit to our GP (in Scotland) for a crisis in my WIfe's health and are blessed with a really good Practice.  I must say I don't like the sound of your GP at all - are you able to vote with your feet? I think I would.  His advice sounds to me to be dubious and certainly unprofessional.

How long did your  Partner stay on Amlodipine? I hope it's not still in the mix.  Where is his rash?  Mine was on my back and you can see it in a photo if you go to my "Expressions" page.  It was a sign of an allergic reaction that was spotted by a physio I was being treated by briefly.   I couldn't see it of course and it was not itchy so I might have had no warning until something went catastrophically wrong.

In the UK we set the bar 'lower' than they do in the States as regards  BP - that is we accept higher levels than they do as being OK.  There may be justifications for the difference or maybe we'll gradually move towards the US criteria, or even vice versa (but I think that less likely).  Even so, his diastolic level sounds far too high to me.  My Oncologist leaves side-effect management to my GP, but she specifies the target level she wants to see under her treatment of my cancer.   She wants mine to be generally below 140/90 and would probably rethink my treatment if my GP's prescriptions didn't achieve that.  Mine is currently running more like 130/85, which we're all happy with.  Your GP may take the view that there's no desperate urgency and persisting with Ramipril should be given a chance.  In view of your Partner's reaction and the way he's feeling I question whether that's a good strategy.

Still, at least the BP indicates that the Sutent is doing its job (I presume his BP wasn't at that sort of level before this treatment started).  The evidence showa that knocking BP back down doesn't lessen the good work of the Sutent, whereas leaving BP consistently high for any length of time is a bad idea.  I'd pay more attention to his Oncologist than to his GP.  If it comes to it, you could maybe ask to have some input from a cardiologist.

 

TerriNick
Posts: 43
Joined: Mar 2013

Hi Tex

 

I hope all is well with your wife now. I am not happy with the GP either and we will be voting with our feet that's for sure. In the meantime he saw another GP there today who was much better. She has taken him off Ramipril and suggested he try the Felodipine at 5mg morning and 5mg night to see how that goes. However the Royal Free hospital consultant was not very happy at the comments from the GP yesterday and she has suggested Losartan as a new ACE to try. So we will try that and see how it goes.

It's good to hear your story though and realise that it is possible to get the BP down into normal range again.

How long have you been taking the anti-cancer meds? And how is it going for you?

Take care for now

Terri

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Terri, it sounds as though you're getting genuine care now and do please keep us posted on how it goes - much better from here on, I'm sure. 

To answer your questions: I've been on Votrient since early in November, for an inoperable abdominal wall tumor and a couple of affected lymph nodes.  In September I was in some pain and on max daily dose of paracetamol (acetominophen, Tylenol, in the US) and it seemed likely that I'd need to move on to tiers of heavier stuff fairly soon.  As it is, right now I'm taking no painkillers at all.  That may change, and I've no intention of getting too macho about it, but so far so good.

I hope your partner has been able to cheer up a bit.  All the best to you both.

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