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WHICH DRUGS TO AVOID THAT HAS , SEVERE SIDE AFFECTS ?

diamond-n-the-rough
Posts: 14
Joined: Jul 2009

I am a 8yr. cancer survior, and i'm currently taking steroids for back pains, H.G.H for muscles ,testosterone for my sex drive. I've just learned that my pituitary gland isn't working low thyroid and low cortisone. I have not working sweat or saliva gland taking salagen for life hydrocodone,for life vit.D and alot of other drugs. Can anyone tell me if they have had any bad experience from thes drugs mentioned.

terato's picture
terato
Posts: 384
Joined: Apr 2002

Some have problems with medications that don't bother others. Your reaction may be totally different from mine. If your doctor believes that something is worth trying on you, you need to follow his lead until you exhibit side-effects that warrant your doctor's changing to something else. Always keep your doctor informed about what you take and what you stop taking.

Love and Courage!

Rick

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

This is a very important discussion to have with your doctor. You can educate yourself as well just by reading the second page of the insert that comes with the drug (if there is none, ask your pharmacist for a copy).

I can tell you, long term steroidal use (and this is the only comment I will make about a treatment), is not healthy without follow-up from your doctor. While helping to treat, it may also have an effect on your bones (i.e. osteoperosis).

The thyroid can be checked out with a simple blood test ordered by your doctor.

Bottom line, if you feel the effects are not right, do not be afraid to question your doctor.

Paul E. (Hodgkoid2003)

ZooDavid
Posts: 12
Joined: Oct 2008

Pain killers are known to cause constipation to the Nth degree! I found out the hard way, during radiation, after Not being warned by my doctor or nurses, they after said they thought someone would have told me, I ended up in the emergency room with a severe blockage in my intestines.The food I ate, when I could eat solid food!, had not passed in about 8 days!? yeah I had to have x-rays to see how bad the blockage then a atavan to calm me down then a very large inemma! yup! But anyway after a year on fentenal and vicodin I had to ween myself off the fentenal patch.The doctors were suprised that I wanted to get off the meds.!?They said "Most people go Up in the meds. not Down?" well I did not want to be addicted to drugs and would rather feel some more pain.So I did cutbaack and go through withdrawl two times, no three, and now I am off the fentenol.Wow my doctor offered methadone but I have heard that is much harder to get off than just dropping your dosage month by month.Like It's been over a year when I started radiation, no chemo., now the surgeon wants to take out the lump that has been there all along!? so I am sheduling surgery this month and I hope that is easier than the radiation.
I dont know if I hit on the topic but "I" do feel a little better get this out!
Good Luck to All of Us!
p.s. I think the american cancer society should have hospitals that are free to cancer patients like the Shriners Burns do! There is enough money collect thats for sure!
I hate being asked, at my local store or where ever, would I like to donate "For the Cure?" because the ACS has done nothing financially for anyone I have ever heard of! except send links to charitable orginasations! that offends me greatly!

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I am not familiar with the drugs you are taking but Terato is right, you should check with your doctor, some people experience more side effects than others with the same drugs and other side effects are common to most, hard to say.

Everyone reacts differently on the whole so check with your doc and all the best. Blessings, Bluerose.

tasha_111's picture
tasha_111
Posts: 2043
Joined: Oct 2008

OK I can understand why they don't give us a creepy-list on the first day of chemo, but surely, even on a 'need to know' basis, we should have been told more! THEY never mentioned Chemo-Brain (Thank goodness I had a peer support worker from the Canadian Cancer Society) I thought I was going insane!
THEY never mentioned Peripheral Neuropathy which makes me stagger about like a raging alkie and fumble about in my purse for change (Until I start to shake and get into a major panic attack)

THEY never mentioned depression .... MAJOR DEPRESSION which I have found to be a lot more dangerous than the cancer.

THEY don't tell you that even after a year out of treatment, your taste buds will be skrewed and the end of your tongue will burn AND you'll have a horrible taste in your mouth and not feel like eating anything!

THEY also failed to mention how my relationship would be ruined.

Or that I would end up deformed, alone, miserable and thoroughly hosed off. Sorry, just venting.

Jxxxxxxxxxxx

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I have asked all those questioins on and off over the 20 years I have had after diagnosis and I guess there are many reasons why the docs didn't tell us about possible side effects. First I don't think they knew about some of them, especially with long term survival and how it would play out on the body so many years later. Secondly I dont think in general docs know EVERYTHING about every single drug we get - how can they? I am not standing up for the docs at all in this I think we all should be better informed period, but how much can we take on diagnosis is another factor. They give us what basics they know and some thing we dont need to know the rest.

It's a toss up, take the chance and have an opportunity to cure our cancers or not take the meds needed and succomb to it? Once diagnosed it's all about balancing meds and prognosises and treatments it seems. 6 of one and half a dozen of another kind of reasonings sometimes.

I remember that years back when I started getting 'chemo brain' it wasnt talked about and like you they looked at me as if I was bananas and the words 'chemo brain' wasnt even coined yet. Today, 20 years later the docs recognize chemo brain as a distinct possibility and recently I went to a memory clinic and after a battery of tests the neurosurgeon I saw validated chemo brain and said he has seen it in other survivors They used to think that chemo didnt cross the blood-brain barrier but they know now that some, not all, do so that is what made the difference.

There is a heavy price to pay for many with cancer treatments but the tossup involved life or not so much. Sigh.

Hope you are having some good days Tash. Hugs. Bluerose

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I have asked all those questioins on and off over the 20 years I have had after diagnosis and I guess there are many reasons why the docs didn't tell us about possible side effects. First I don't think they knew about some of them, especially with long term survival and how it would play out on the body so many years later. Secondly I dont think in general docs know EVERYTHING about every single drug we get - how can they? I am not standing up for the docs at all in this I think we all should be better informed period, but how much can we take on diagnosis is another factor. They give us what basics they know and some thing we dont need to know the rest.

It's a toss up, take the chance and have an opportunity to cure our cancers or not take the meds needed and succomb to it? Once diagnosed it's all about balancing meds and prognosises and treatments it seems. 6 of one and half a dozen of another kind of reasonings sometimes.

I remember that years back when I started getting 'chemo brain' it wasnt talked about and like you they looked at me as if I was bananas and the words 'chemo brain' wasnt even coined yet. Today, 20 years later the docs recognize chemo brain as a distinct possibility and recently I went to a memory clinic and after a battery of tests the neurosurgeon I saw validated chemo brain and said he has seen it in other survivors They used to think that chemo didnt cross the blood-brain barrier but they know now that some, not all, do so that is what made the difference.

I remember when I was first diagnosed way back in 1989, my oncologist talked about some side effects but when I was receiving my first chemo the nurse was reading the side effects of the drugs as she was administering them. lol. Or just before she was actually injecting themm so I could give her a go ahead or not - like I would stop then. lol. I forget if it was during the actual injecting or just before. Chemo brain strikes again, lol. Anywho it was read to me too late, should have been way before that I was told the after effects who would stop treatment due to side effects on the first day you are fighting for your life with treatments. Sigh.

There is a heavy price to pay for many with cancer treatments but the tossup involved life or not so much. Sigh.

Hope you are having some good days Tash. Hugs. Bluerose

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

Tasha,

I am a long term survivor of Hodgkin's Disease (20 years almost). While I developed some side effects in the short term (like first few years), such as infertility, hypothyroidism, and some loss of hair (from rads that never grew back), I had been told those were possibilities. But as BlueRoses put it, faced with the alternative, it was a no-brainer.

The unfortunate thing, is that no matter what newer medicine gets discovered, long term implications are probably never known until they appear. Decades ago, patients didn't survive cancer, so long term side effects weren't an issue, there were no protocols for following up.

Fast forward to 2008, and seemingly without warning, I needed to have emergency, life saving bypass surgery. As I gathered my records from 20 years ago, no where, I repeat no where was heart disease listed as a potential side effect. But when they went to do the bypass, they discovered the damage, and definitely attributed it to the treatments that I recieved.

Still, my family physician, who has known me personally for 20 years as well, never saw this coming. She was never taught this stuff in medical school. And the truth is, the discipline of late term effects has only been discovered in recent years. Patients are now followed up forever. Dr. Keving Oeffinger from Sloan Kettering Memorial has written many papers on this problem.

One thing that Dr. Oeffinger stresses, the things that develop long term in us, though most likely are not reversible, can for the most part be managed. But this is only possible, if you have someone knowledgable in what to look for.

It has been 17 months since my bypass. Over this time, I have learned other areas of my body which have been affected by my treatments 20 years ago. Emotionally, I think I am finally coming around. I know that I have often felt as "numb" as the day that I was told that I had cancer. But when I look back, especially the last 5 years (adopting my 2 daughters), the only thing I would have changed if I could, was to be more diligent in following up, and not have gotten "lost".

Your feelings are totally understandable, and normal. And by posting these feelings, hopefully you can find out what is needed to help.

Paul E. (Hodgkoid2003)

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I commend you for weaning yourself off the opioid meds. I don't think most docs realize the problem with tolerance - hopefully they are well intended when they prescribe these drugs - or maybe they think they are doing the patient a favor when they keep prescribing higher doses of these things. While not a medical professional I am in the mental health field and I work with many patients that have long-term problems as a result of docs - mostly of the "pain management" variety - that use these opiates as long term treatment for pain.

Like your story, every drug has side effects and each person will react differently. I feel very fortunate - at least for now - that I don't have some of the horrendous side effects like I read on these discussion boards. At first I thought my doc was "under"- treating me when he did not recommend radiation after chemo was complete but now I feel fortunate when I read of the side effects that most women experienced.

I think the reason that docs don't tell us alot is they want us to be compliant and not balk at their treatment recommendations. I don't see them being eager to help link their patients up with each other. I know this may seem jaded.

But as others have said, what are the alternatives. I do wish docs would put more emphasis on integrative medicine to supplement the traditional treatments.

Wishing everyone peace and joy. Mary Ann

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