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Index » Radio Paradise/General » General Discussion » Other Medical Stuff Page: 1, 2, 3 ... 44, 45, 46  Next
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katzendogs

katzendogs Avatar

Location: Pasadena ,Texas
Gender: Male
Zodiac: Aquarius
Chinese Yr: Dragon


Posted: Mar 1, 2018 - 5:37pm

 Red_Dragon wrote:

P's pill is covered by a manufacturer's grant - thank the gods. I looked it up and ran the numbers; it's literally $500 per pill. Obscene.

 
I have /had one through co-pay relief. Two shots (one every 6 mos.). Changed Medicare plans so don't know yet how it's going to go for shot #2. Osteoporosis. I used to be 6-2 now 6ft. 

Bright side is i won't need to duck!{#Lol}
Red_Dragon

Red_Dragon Avatar



Posted: Mar 1, 2018 - 5:06pm

 Coaxial wrote:

I lucked out and get my one and only pill for 90 days for free...I had been paying 14.00 a month. Crazy that just by changing to a 90 day supply I found out about this deal. Just lets you know how much they are gouging elsewhere to make up for old cripples like me.

 
P's pill is covered by a manufacturer's grant - thank the gods. I looked it up and ran the numbers; it's literally $500 per pill. Obscene.
katzendogs

katzendogs Avatar

Location: Pasadena ,Texas
Gender: Male
Zodiac: Aquarius
Chinese Yr: Dragon


Posted: Mar 1, 2018 - 5:01pm

 Coaxial wrote:

I lucked out and get my one and only pill for 90 days for free...I had been paying 14.00 a month. Crazy that just by changing to a 90 day supply I found out about this deal. Just lets you know how much they are gouging elsewhere to make up for old cripples like me.

 
{#Wave}

I just did this as well. (mail order) Gettin'n deep into my Medicare this year while I can get it! 3 of mine are now free for a 90 and one Tier 3 for a $10 savings.
 Hope all is well.
Coaxial
Shine On.
Coaxial Avatar

Location: 543 miles west of Paradis,1491 miles east of Paradise
Gender: Male
Zodiac: Capricorn
Chinese Yr: Dragon


Posted: Feb 28, 2018 - 5:37am

 kurtster wrote:

'twas my intention.  On the HMO vs PPO thing ... HMO's certainly have their place, but as we get older and things are more likely to happen to us, especially if there are profound family histories of certain diseases, a switch to PPO's is in order, before you get ill, just in case.  That may not be an option depending on how you get your insurance, but if it is, do it.  The cost will be higher, but it puts you more in charge of picking who will serve your needs and when.  It may also give you a broader formulary to work with for your prescription drug needs.



 
I lucked out and get my one and only pill for 90 days for free...I had been paying 14.00 a month. Crazy that just by changing to a 90 day supply I found out about this deal. Just lets you know how much they are gouging elsewhere to make up for old cripples like me.
kurtster

kurtster Avatar

Location: drifting
Gender: Male
Zodiac: Libra
Chinese Yr: Dragon


Posted: Feb 28, 2018 - 5:28am

 ScottFromWyoming wrote:
Excellent post (I think), Kurt. It's directed at one person but is informative for all. 
 
And A: Kick this thing!

 
'twas my intention.  On the HMO vs PPO thing ... HMO's certainly have their place, but as we get older and things are more likely to happen to us, especially if there are profound family histories of certain diseases, a switch to PPO's is in order, before you get ill, just in case.  That may not be an option depending on how you get your insurance, but if it is, do it.  The cost will be higher, but it puts you more in charge of picking who will serve your needs and when.  It may also give you a broader formulary to work with for your prescription drug needs.


Coaxial
Shine On.
Coaxial Avatar

Location: 543 miles west of Paradis,1491 miles east of Paradise
Gender: Male
Zodiac: Capricorn
Chinese Yr: Dragon


Posted: Feb 28, 2018 - 5:08am

 ScottFromWyoming wrote:
Excellent post (I think), Kurt. It's directed at one person but is informative for all. 
 
And A: Kick this thing!

 
What Scott said.{#War}
ScottFromWyoming
I eat pints
ScottFromWyoming Avatar

Location: Powell
Gender: Male
Zodiac: Pisces
Chinese Yr: Tiger


Posted: Feb 27, 2018 - 10:43pm

Excellent post (I think), Kurt. It's directed at one person but is informative for all. 
 
And A: Kick this thing!
fractalv
You don't take a photograph, you make it. - Ansel Adams
fractalv Avatar

Location: Cornell, CA
Gender: Male
Zodiac: Libra
Chinese Yr: Rat


Posted: Feb 27, 2018 - 10:21pm

Thank you Kurtster. PM sent your way.
kurtster

kurtster Avatar

Location: drifting
Gender: Male
Zodiac: Libra
Chinese Yr: Dragon


Posted: Feb 27, 2018 - 7:45pm


 fractalv wrote:

If the PSA test doesn't go to 0 after the surgery (which is rare but possible, and they had me sign a consent form to allow them to remove affected lymph nodes during the surgery if they thought it was necessary), there would be radiation treatments, I was told they don't have an effective chemo for this kind of cancer.

fractalv wrote:
Thank you so much, I am grateful for all the kind words, thoughts and prayers. And as far as I'm concerned, they worked! After I paid, signed all the consent forms, answered all the questions, got shaved in a place I've never shaved before, IV'd and EKG'd, pumped with a bunch of stuff including antibiotics and pain meds, answered more questions (most of them were the same over and over), they called off the surgery because they forgot to tell me (and it wasn't anywhere in the pile of torturous pre-op instructions that I followed to the T) to stop taking baby aspirin 7 days before the surgery.

Please doctors and nurses, don't assume everyone just knows this. I now know it, but I wasn't a regular in the medical procedure game (and really hope I never become one) and this is not something I would just know. Just as I don't assume my clients would know that the WiFi will work a lot better if the WiFI router is placed with a clear view of the things that demand the most of it. Kind of makes sense but many people just don't think about it and I don't assume they would. If it's going to be a deal breaker, one would think it would be in those instructions.

The cancer didn't go away, but I have time now to really appreciate having all of my organs, and I call that a win. Might be next January or February before we have to do this all over again.

  

What follows is in no way to be considered medical advice in any way shape or form.  I am legally not allowed to offer any advice.  It is only my opinion and should be verified by qualified medical persons before acting on any of this.  I offer this only as somethings to consider from one cancer survivor to another.  One becomes a cancer survivor as soon as you are diagnosed with cancer. 

The bolded above are two big red flags that are the primary reason for my reply.  This pre-op failure is so basic that it is unacceptable and reason enough to run away from this hospital or any hospital that fails this step.  Yes it is the most basic of all pre surgical instructions.  Stop taking any and all NSAIDs immediately for a period  appropriate prior to surgery.  NSAID's include Aspirin · ‎Naproxen · ‎Ibuprofen · ‎Diclofenac and some others.  They can prevent clotting of blood and cause uncontrolled bleeding during and after surgery.  Thank God someone caught this before.

And on the lymph node removal.  The lymphatic system as you may or may not know is the body's waste disposal or sewer system.  It is a chain of nodes and connectors throughout the body and it is imperative that this system not be broken up unless absolutely necessary.  Being a Lymphoma patient, which in general terms is a cancer of that system, I am familiar with it first hand.  Having said that, I only recently learned of the importance of keeping it intact.  My cancer / Non Hodgkin Lymphoma requires the taking of a complete lymph node in order to make a diagnosis.  It is the only way to confirm it.  I had no choice. 

We all have heard about cancer spreading to the lymph nodes (different from Lymphoma) prompting removal of those affected nodes to slow down the spread.  Well I have now learned otherwise in just the past month from my step daughter's new oncologist.  He is no lightweight, imho.  He was extremely unhappy with her treatment and especially the removal of some of nodes in the process of taking out some of her melanoma tumors.  He emphasized the importance of keeping the system intact and that it is very treatable with new immunological therapy coming online (as well with chemo if needed, as was in my case).  (this does not negate radiation therapy for the prostate, that would still be needed)  In other words, the prostate  and any affected lymph nodes should be dealt separately.  The prostate removed and the lymph nodes to be biopsied, but left in place for subsequent and appropriate treatment keeping the lymphatic system intact as much as possible.  The preceding is my conclusion based upon careful listening.  I may be wrong about this, but this is a question that should be raised in the course of your treatment.  That is why I consider it a flag.  Whoever is in charge and or doing the surgery is not up to date on the latest procedures, again, imo.

This eff up that has delayed your surgery may be a gift to proceed more carefully and cautiously, seeking out a second opinion as well as searching for a better hospital / venue for the surgery.   Based upon what you stated, everyone failed here.  Both the surgeon picked by your oncologist whose team should have informed you as well as the hospital's pre-op team.  They are separate from one another and both failed, imo.  That, to me is an unforgivable error and makes me wonder what else is being overlooked.  I would not give them another chance.

Any cancer diagnosis is life changing and causes emotions to take you over, initially.  You are in shock and for good reason.  It can and will kill you if left untreated.  Emotion must be controlled and cool, calm thinking must dictate your course of action.  Ideally, you take all emotion out of it and treat it like a business venture.  Easier said than done, but been there done that.

Fortunately, prostate cancer is common, well understood and generally progresses slowly.  I do not know what stage you are and that is a consideration, always.  But time would be on your side unless you are at an advanced stage.  While common, there is no routine treatment or surgery of any cancer.  It is all unique to the individual.  Since you are looking at next year, you will go through a policy renewal and you now have a pre-existing condition.  Now that you have cancer, you need a PPO plan if you do not have one already.  If you have an HMO, you must change it to a PPO plan, ASAP.  HMO's are ok for colds and broken bones until you get sick, really sick.  You need to be able to seek out your own specialists without needing permission, where ever you can find them.  An HMO will restrict your choices to what they consider best for you regardless of how you feel about it.  You don't have any say so in the matter.  You take whoever they assign you.  I would recommend that you seek out a hematologist / oncologist.  You should have had a PET scan as well as a CT scan prior to surgery just to see what lights up prior to surgery, notably and especially lymph nodes as well as vital organs and your bone marrow.  Hematologist / oncologists are the best suited for dealing with diagnosing and directing cancer treatments, imo and would find the surgeon most suited for your needs.  They almost never perform surgery, they know who does and does it well.  They will be best suited for dealing with the lymphatic system should there be cause and more than likely most current on recent developments in treatment.  You now have time to do some searching for quality care and plan ahead.  You have more time to ask questions and get answers.

Pardon me if I overstepped. The preceding was not meant in any way to cast any aspersions on you or your decision making in your journey through cancer.  If your surgery had gone as scheduled, I would have nothing to say other than wish you a speedy recovery.  But you raised two glaring red flags that compelled me to write the above, now that you have the need to alter your course of action. 

I only know what I know.  I defer to others here who have more knowledge and experience for criticism and corrections of what I offered above and will not take any offense of either.  Anecdotal exchanges of knowledge does have a place in dealing with cancer.  I am reminded of a woman I met during my stem cell transplant who lived just an hour away from the Cleveland Clinic, as do I, who was told by her doctor where she lived that there was nothing more that could be done for her.  It was time to get her affairs in order.  Bullshit.  Never settle.  There is no such thing as routine cancer / treatment.

Wishing you all the best, k


meower

meower Avatar

Location: i believe, i believe, it's silly, but I believe
Gender: Female
Zodiac: Gemini


Posted: May 3, 2017 - 10:45am

Hoopla, here anyway. The thing that you sign when you say that you know your rights under HIPPA here says that you agree that your insurance company can talk to your doc/review your records

 


JrzyTmata
You say tomato, I say "Hi Charlie!"
JrzyTmata Avatar



Posted: May 3, 2017 - 10:45am

 Red_Dragon wrote:
Is this for real, or just interweb hoohaa?

 

 
SNOPES says mixed truth/false
Red_Dragon

Red_Dragon Avatar



Posted: May 3, 2017 - 10:35am

Is this for real, or just interweb hoohaa?

 
kurtster

kurtster Avatar

Location: drifting
Gender: Male
Zodiac: Libra
Chinese Yr: Dragon


Posted: Mar 11, 2017 - 1:48pm

 triskele wrote:
*long post*

 
Hoping you get relief.  I have sort of the opposite situation.  I get testosterone shots every other week.  Next month is the 8th anniversary of my transplant, which wiped out any ability to produce testosterone naturally.  IIRC, its been 6 years of these shots which have wrecked havoc on my soft tissues as well.  I used to have the shots alternated between shoulders, but after about 3 or so years I suddenly got what we all thought was tennis elbow.  We eliminated that as a possibility and concluded it was the shots.  Since then I now have them from left to right shoulder and then left hip to right hip and that's the pattern.  The tennis elbow stopped went away after a few months and life was good again.  Now in the past couple of years, I'm getting these pains and cramps in my ribs and legs.  The ribs hurt like when you hold your jaw open too long and happen when I twist in a funny way.  The leg cramps are getting so bad that I will wake up screaming in the middle of the night and getting up and standing does not do a damn thing and it lasts for a half an hour now.  I have tried boosting my potassium intake and that seems to give me some relief.  Its still not resolved and the bouts are more frequent.

Its the long term stuff you have to deal with afterwards.  When you're told your terminal, you don't worry about what's left of you until you get there, if you get there.  Pain sucks, period.  But you're doing for you what you have to do by talking to the various people about the different meds you're dealing with and informing and questioning the others.  Surviving this stuff after the primary treatments is not a passive event, ever.   I'm pulling for you.

{#Cheers}  {#Hug}


triskele

triskele Avatar

Location: The Dragons' Roost
Gender: Female
Zodiac: Taurus
Chinese Yr: Tiger


Posted: Mar 11, 2017 - 8:56am

 JrzyTmata wrote:

You're lucky your doctor actually listened to you. Most just say stay off the internet.
Keep fighting!

 
This is one reason I love my doctor.  He agreed that the faslodex was probably causing the issues, but he hadn't been aware that the OTHER drug I was on was studied with the same chemo pill...so he learned something from me, and said so.  
JrzyTmata
You say tomato, I say "Hi Charlie!"
JrzyTmata Avatar



Posted: Mar 11, 2017 - 8:36am

 triskele wrote:
*long post*

Here's hoping that the positive effects of the cortisone, which have started to be noticeable, will be complete and permanent this time!!  

 EDIT:  Maybe I can play my guitar again soon!!!!!!

 
You're lucky your doctor actually listened to you. Most just say stay off the internet.
Keep fighting!
SeriousLee

SeriousLee Avatar

Location: Dans l'milieu d'deux milles livres


Posted: Mar 11, 2017 - 7:59am

 triskele wrote:
*long post*

Many breast cancer patients who survive past major treatment, yet require ongoing maintenance treatment, are given hormone blocking medications.

This is because some types of breast cancer are hormone reactive.  My types (there were two) were hormone reactive, so I have been on hormone blockers now for a year.

Unfortunately, the hormone blocker alone proved inadequate after 6 months off of chemo (the cancer in the liver woke up again), so chemo was added back as a "lighter" oral pill.  There are far fewer side effects from this type of chemo, yet is has been shown to prevent the spread of cancer cells.

So...in October, in conjunction with the introduction of the new chemo pill, the hormone blocker was changed from a pill, to a different drug administered by injection, which studies had shown to have a high survival success rate.

Yes, we were back in survival war again.

After a couple of months on that regime, SOMETHING started wreaking havoc with my soft tissue, causing awful muscle spasming in my legs and feet, and tendon pain and damage in my hands and wrists.

I have not been able to do any massage therapy for months because of the pain, and had lost my ability to do almost ANY task at all without suffering pain.  Think about all of the things you do with your hands....even the small things.  Yeah.

I got cortisone shots in December, but the effects were temporary.

In the meantime, however, I did some research, and found lots of evidence that the injectable hormone blocking drug was almost assuredly the cause of these life-disrupting side effects.

Then, there was also the fact that the monthly phone calls I have to make to the chemo drug company always involved them asking me if I was being treated with the injectable hormone blocking drug, OR with the oral drug that I USED TO TAKE.

The next time I saw my doctor (January), I explained to him that the leg and foot cramping, and the wrist pain, were unacceptable.  

He was looking like he was going to put me back on IV chemo, when I told him that I had done some research, and had found that the injection drug was PROBABLY causing my issues, AND I told him about how the chemo drug company was always asking me about which "companion" drug I was being treated with. 

I asked if it was possible to just switch the hormone blocker.

He rubbed his chin, then left the exam room.  He went to his computer, and verified that the studies done with the first hormone blocker were just as successful (though done on fewer patients) as the studies done with the injectable drug...... so he took me OFF of the injection, and put me back on the first drug!

The muscle cramping stopped a few days after the injectable drug was out of my system.  I've been able to sleep through most nights without one cramp!

Unfortunately, however, the wrist pain continued, and worsened, to the point of my not being able to use my hands for ANYTHING without pain, sometimes bringing me to tears.

I put a call in to the orthopedist, and explained what was going on.  I explained that the drug that started this has been removed from my protocol, and was now three months out of my system....and that my hope was that he would agree to do more cortisone injections before we started talking about surgical intervention.

I had my cortisone shots on Thursday.  They were incredibly painful. Worse than the ones in December. I made it through the process itself without crying, but when I got in the car, I burst into tears.  The pain was mind blowing.  Not as bad as my biopsies, but BAD.

By the next morning, though, I could feel a difference, and by last night, I was able to go grocery shopping and not drop anything, and was able to reach around and scratch my own back!!!

Here's hoping that the positive effects of the cortisone, which have started to be noticeable, will be complete and permanent this time!!  

 EDIT:  Maybe I can play my guitar again soon!!!!!!

 
Phew! You've sure been through a lot. Keep your head up high and play that guitar strong! {#Good-vibes}
Coaxial
Shine On.
Coaxial Avatar

Location: 543 miles west of Paradis,1491 miles east of Paradise
Gender: Male
Zodiac: Capricorn
Chinese Yr: Dragon


Posted: Mar 11, 2017 - 7:48am

{#Meditate}{#Pray}{#Meditate}{#Arrowd}
triskele

triskele Avatar

Location: The Dragons' Roost
Gender: Female
Zodiac: Taurus
Chinese Yr: Tiger


Posted: Mar 11, 2017 - 7:43am

*long post*

Many breast cancer patients who survive past major treatment, yet require ongoing maintenance treatment, are given hormone blocking medications.

This is because some types of breast cancer are hormone reactive.  My types (there were two) were hormone reactive, so I have been on hormone blockers now for a year.

Unfortunately, the hormone blocker alone proved inadequate after 6 months off of chemo (the cancer in the liver woke up again), so chemo was added back as a "lighter" oral pill.  There are far fewer side effects from this type of chemo, yet is has been shown to prevent the spread of cancer cells.

So...in October, in conjunction with the introduction of the new chemo pill, the hormone blocker was changed from a pill, to a different drug administered by injection, which studies had shown to have a high survival success rate.

Yes, we were back in survival war again.

After a couple of months on that regime, SOMETHING started wreaking havoc with my soft tissue, causing awful muscle spasming in my legs and feet, and tendon pain and damage in my hands and wrists.

I have not been able to do any massage therapy for months because of the pain, and had lost my ability to do almost ANY task at all without suffering pain.  Think about all of the things you do with your hands....even the small things.  Yeah.

I got cortisone shots in December, but the effects were temporary.

In the meantime, however, I did some research, and found lots of evidence that the injectable hormone blocking drug was almost assuredly the cause of these life-disrupting side effects.

Then, there was also the fact that the monthly phone calls I have to make to the chemo drug company always involved them asking me if I was being treated with the injectable hormone blocking drug, OR with the oral drug that I USED TO TAKE.

The next time I saw my doctor (January), I explained to him that the leg and foot cramping, and the wrist pain, were unacceptable.  

He was looking like he was going to put me back on IV chemo, when I told him that I had done some research, and had found that the injection drug was PROBABLY causing my issues, AND I told him about how the chemo drug company was always asking me about which "companion" drug I was being treated with. 

I asked if it was possible to just switch the hormone blocker.

He rubbed his chin, then left the exam room.  He went to his computer, and verified that the studies done with the first hormone blocker were just as successful (though done on fewer patients) as the studies done with the injectable drug...... so he took me OFF of the injection, and put me back on the first drug!

I did NOT get the injections that day, and went home and pulled the bottle of pills out of the back of the cabinet and started on them again.

The muscle cramping stopped a few days after the injectable drug was out of my system.  I've been able to sleep through most nights without one cramp!

Unfortunately, however, the wrist pain continued, and worsened, to the point of my not being able to use my hands for ANYTHING without pain, sometimes bringing me to tears.

I put a call in to the orthopedist, and explained what was going on.  I explained that the drug that started this has been removed from my protocol, and was now three months out of my system....and that my hope was that he would agree to do more cortisone injections before we started talking about surgical intervention.

I had my cortisone shots on Thursday.  They were incredibly painful. Worse than the ones in December. I made it through the process itself without crying, but when I got in the car, I burst into tears.  The pain was mind blowing.  Not as bad as my biopsies, but BAD.

By the next morning, though, I could feel a difference, and by last night, I was able to go grocery shopping and not drop anything, and was able to reach around and scratch my own back!!!

Here's hoping that the positive effects of the cortisone, which have started to be noticeable, will be complete and permanent this time!!  

 EDIT:  Maybe I can play my guitar again soon!!!!!!


Antigone

Antigone Avatar

Location: A house, in a Virginian Valley
Gender: Female
Zodiac: Aquarius
Chinese Yr: Rat


Posted: Mar 9, 2017 - 12:46pm

 Antigone wrote:

HUH?? {#Stupid}

 
Never mind, I used my Google finger.


Antigone

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Location: A house, in a Virginian Valley
Gender: Female
Zodiac: Aquarius
Chinese Yr: Rat


Posted: Mar 9, 2017 - 12:24pm

 ScottFromWyoming wrote:

That's good, but at the same time, someone who's done thousands might not be so interested in fixing what ain't broke. I tried to find something more current that has better results; but that's not the case here. All systems go! IANAD.

 
HUH?? {#Stupid}
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