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Can't believe how you have to double check everything

love4life
Posts: 33
Joined: May 2010

My mom has recently been diagnosed with stage IV RCC with mets in her lungs. This is 2 years after her kidney was removed. It just amazes me that you can't trust that what is supposed to happen will happen and you have to be on top of everything. My mom and dad divorced 20+ years ago and they both rely on me to help them with their medical issues. My mom had pneumonia 2 weeks ago and even though she was in the hospital it took me being there when the doctors did their rounds at night to finally get her released. One doctor thought the other did it and that doctor was waiting for the first doctor's ok. She didn't ask questions - just figured she needed to still be there even though she hadn't talked to either doctor in more than 24 hours. Then the oncologist that she decided to go with met with her in the hospital and said his office would get things rolling so she could start Votrient. I called there 2 days after she was released and they hadn't done a thing about it even though it was clearly stated in his dictation. Of course he was out of town until this morning so now we are another week behind on her treatment. It's been frustrating and yet I know the doctors are very good and are the people she needs to be in contact with at this point. I'm tired and want off this roller coaster but the ride is just starting!!!!!

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

I agree. You have to be involved with every aspect of care and treatment. Reread and study everything. People have told me for years that you need to take responsibility for your own health care, but, I didn't realize until recently, the degree of that responsibility. I had thought that taking control of my health care was making my six-month and annual appointments on schedule.

I personally think that if you have a good doctor, you have an incredibly busy doctor. Today's doctors see patients, study charts, make diagnosis, consult with other doctors, write prescriptions, stay abreast of happenings in their field, research, teach, and consult with patients. They simply do not have a lot of time to expend to a single patient. So you hope they have a strong, competent team watching their back but that is not always the case. Sometimes they do but not always.

That's why I get copies of everything these days. But since I have no medical degrees, I have a steep learning curve and keep a medical dictionary and the google search button close at hand.

littledarlin's picture
littledarlin
Posts: 102
Joined: Mar 2012

I agree this double checking is so frustrating..having to be someone elses advocate or your own advocate is no easy task..I had to be my own advocate while in the hospital a little over 2 weeks ago..and this is no easy task especially when you are struggling for every breath..It seems to me that the health care system has gone down the tolite..What good does it do the patient to have a wonderful doctor if the others on the team fail to follow through with their part..I had to sign a medical release while in the hospital for more pain medication because the nurse that was suppost to be taking care of me failed to give me my pain meds on time..she was 2 hours late with my pain meds. I could not breath because of all the pain from surgery..The pain got out of control because of her failure which put me at risk, and I had to take additional pain meds to control the pain..I had to sign a release for these meds because there was a chance that the additional medication would cause me to stop breathing and I would go into cardiac arrest..I thought the whole idea behind good health care was the oath that these professionals take before they enter the profession, stating that they will do no harm..My surgeon told me on my follow up visit this week that I should of had a pulmonary evaluation before surgery. I thought it was his job to see that this was done if needed at my pre opt visit before surgery..There comes a point where these health professional need to stand up at the plate and take respondability for there lack of care..We can be our own advocates but we are not doctors and we rely on their knowledge and expertise when making these decisions and when faced with life threatening situations..
I sure hope I NEVER have to been in a hospital again..God help me if I do..I am not alive today because for their wonderful care. I am sure God was watching out for me and that is why I am still here.

My rant for today!!
littledarlin...

NurseRatchit
Posts: 4
Joined: May 2012

Hello:

First time user and thought I could give helpful information and maybe find some of my own. My husband was diagnosed with RCC in 2003. He had a kidney removed and 3 subsequent surgeries from '03 to '05 to remove tumors on his bowel, liver and stomach region. In 2006, we started him on chemotherapy drugs. Since then he has been on just about every one available - each giving him about a year each. In January, he started on Avastin. In April, scans showed tumor growth which meant the Avastin did no good. Stopped the Avastin and was about to start on the newly released Inlyta when he had terrible pains in his groin area and I took him into the E.R. We thought a kidney stone, but it was the tumor growth in that area pressing on a nerve. While in the ER, one of the doctors (actually a med student)asked about my husband's heart. We said there was no problem there, and the doc said to "humor him" as he is new and allow for tests to be done. Thank God he did - turns out that while laying there, my husband was having a heart attack! After an Angiogram the next day, showed a golf-ball sized blood clot in his heart. 100% positive that this was caused by the Avastin - of which this particular drug is well known for. The docs told us it would take at least 6 months to dissolve. For the first time in my husband's long battle, he had to stop work and go on disability. Before this was diagnosed, the doctors told him that the sweating, shortness of breath and terrible coughing was allergies or a bronchial condition. Turned out all of these symptoms were from the heart. I thank God we had him in the ER that night! He started on blood thinners and the clot dissolved in 10 days, not 6 months.

I began my "Nurse Ratchit" investigation as I have done for 9 years and demanded to know from one of these doctors why the heck they didn't EVER check his heart function - AND why he was not on blood thinners before starting the Avastin - something that can be a common practice with the use of this and other drugs such as Torisel. I got alot of blank stares. I ralled them all together in a room at the hospital - The cardiologist, the oncologist, the internist and the lung doctors and told them someone was going to be the "cornerstone" here going forward and they are ALL going to start talking to each other. This shouldn't have happened. I then got the "Maybe it's time to throw in the towel" speech from the oncologist telling me that my husband has had relatively 9 good years and we were running out of options.

I told him that over these past years if I built my husband a coffin for everytime you guys told us to give up, I'd own a funeral parlor by now! Was radiation to treat the two main areas of problem an option? Why, yes! Can't he start on the Inlyta? Why, yes! But, we don't think the Inlyta will do much more than perhaps 6 or 8 months because that seems to be his pattern. Uh, well 6 to 8 months is better than nothing - and in 6 to 8 months, something else will come out. I reminded the oncologist that in 2010 when we got this same end of the road speech that I brought him the idea of Votrient. I had read great success in Europe with this drug. Didn't think it would work and low and behold it carried him through all of 2011 with little to no side effects. He worked, we traveled, etc.

Obviously everyone whether patient or caregiver will know when and if the battle is to end. But as long as there is fight in you or your loved one, and options, and hope, be your own advocate!

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

If i could think think of the one positive that stands out the most about the internet ever being invented is that it allowed us as patients and caregivers the opportunity to be allowed to educate ourselfs relating to our medical issues,i have to credit the internet with extending and even preserving many peoples lives.

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

What a great reminder of the importance of caregiver/patient advocacy. It makes me wonder about all the times things like this happen and no one is called on it. Bet it's a lot more than anyone realizes. Thank you for sharing.

love4life
Posts: 33
Joined: May 2010

My mom's oncologists office just called and they want her to come in before they order any medicine for her. Always something changing. I've been reading up on different meds used because I'm wondering if they won't want to use the Votrient due to her having her heart go in and out of afib when she had the pneuomonia. That was something new that hadn't happened before then so when she met with the first oncologist that wasn't a worry or part of her medical history. Time will tell. I have already put in for time off to go with her. This process of figuring out if the nodules had cancer/what kind started 2 months ago so we are all very anxious to get meds going and hope she feels some relief with breathing issues.

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

You joined us with a barnstormer of a story NurseRatchit and a perfect backup for love4life's theme. With that sort of spirit you'll be a very welcome addition to our ranks. As Alice said, one fears for the poor souls who don't have your personality and verve and just meekly acquiesce in what they're given as the 'party line' by the medics.

Your post is also valuable in illustrating how much things have improved in recent years, how much can be gained by seizing every opportunity and the fact that buying more time, now more than ever, means a good prospect of further significant advances that will extend our lives and quality of life yet further. All the best to you both and please keep on posting here.

foxhd's picture
foxhd
Posts: 1952
Joined: Oct 2011

How true a concept. Let me offer some advice from experience. The squeaky wheel gets the grease but,...knowing what one argues about is paramount. To get understanding and commpliance to ones requests requires honey. Not Vineger.

littledarlin's picture
littledarlin
Posts: 102
Joined: Mar 2012

You can never be to careful. Keep double checking. One thing for sure you won't fall through the cracks if you keeps squeaking that wheel..I have a consult appt with a pulmonary specialist on June 6..better late than never they say..Sometimes it pays to be sweet as honey and other times it pays to be tough as a bull. I find it takes a little of both to get the wheel moving..

little darlin..

NurseRatchit
Posts: 4
Joined: May 2012

Sorry, foxhd, I'm a Financial Attorney working in the Biotechnology industry. It's not in our blood to be sweet and/or passive. I hold as many degrees as these doctors and believe me, when you want something done, you have to fight the "God Complex" that many of them love to have - and you will see this more with Oncologists and Cardiologists as they are critical path specialized fields. I hold these people with the respect, and gratefulness that is warranted for what they do and have done for my husband. However, as I work within the industry of cancer research and meds, I know what I speak to when I fight. I am not coming from a corner of ignorance - moreover to the point, After 9 very long years, you become extremely educated on all aspects of perserving life with this disease. And I will continue to fight and toss a salad every day with that vinegar if it keeps my husband of 35 years on this earth.

KJones1969
Posts: 158
Joined: Mar 2012

I follow up on everything that is going on with my husband and do like Alice and get copies of everything or every report they do concerning him. When he was in the hospital the first 2 times before we found out he had kidney cancer I immediately went and got copies of his entire medical record.

The one thing I like about Duke is they post everything on their website and I can log in and print copies of everything that happens. It is unfortunate that doctors are so busy that you have to follow up on everything but we do. Good luck and I'll be praying for your Mom.

foxhd's picture
foxhd
Posts: 1952
Joined: Oct 2011

Nurse Ratchit, I did not mean to question your motive or integrity. You are right. I also have 3 degrees and have worked in the health care system for 35 years, as has my wife. I know the ropes as well as anyone.I've done well making friends who can help me. Not by creating passive aggressive adversaries who will smile at you and not follow through. Health care is a funny thing. Communication is often poor. Each discipline feels like they are the center of the universe. They think all information should pass through them. I was intimating that having key players in your corner can save alot of head banging. Stay strong in your efforts. No insult intended.

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

As I read it you're in full agreement - that knowledge is power and that you have to handle people appropriately which may mean deference, flattery and strokes, or it may mean confrontation, withering put-downs or going to someone else. You've both been around the scene long enough to be able to take the right tack as the occasion dictates.

Fox, I'm intrigued to know the disciplines of your degrees, so please tell, if modesty doesn't preclude it!

2 other questions: 1. Do you know/use this product, or similar?
https://sunguardsunprotection.com/?ccUser=
2. Are your docs expecting any effect of the MDX-1106 on your melanoma (given the seeming close connections between RCC and melanoma)?

foxhd's picture
foxhd
Posts: 1952
Joined: Oct 2011

T-W, I have my BS' in both education and physical therapy. Masters in Health Care Management.
Sunguard is a clever product. I'll just lather on sunscreen or sunblock at this point, but it is a great idea for little towheads.
Not much as been said about the benefit of the MDX except that it is used for both cancers. That is because once surgically removed, they say it is a cure. To have a plastic surgeon adjust my hairline next friday. He says no problem for wearing my helmet for my bike trips in June. The basal cell ca on my back had been reduced by 50-75% obviously from the MDX. My Melanoma was in situ so that will be gone for good also. Skin oncologist will do a body audit on me every 6 months.

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

Thanks for all the answers and It's so good to hear you're beating cancer on all fronts.

I burn very easily but have golfing friends who are even closer to albino than I am and have late stage cancers so I'll be mentioning the Sunguard product to them and setting about sourcing it hereabouts.

NurseRatchit
Posts: 4
Joined: May 2012

Update on my husband. As noted previously, my husband's blood clot dissolved. The right ventricle of the heart healed to 100%, but in the next two weeks had his left lung collapse - so back in the hospital and more tests. Revealed a tumor that had grown in the lung and blocked a major airway. His lung capacity was reduced to 78 - 86% max. Had to be on oxygen 100% of the time. Talked with the Radiology Doc and asked if he could zap that tumor as well as the tumor in the groin to reduce - he said absolutely! We had hope again. Lymphodema has been a side effect starting about 2 years ago. The fluid builds in his legs and recently, started accumulating around his lung region. He has been through a procedure to drain his lungs twice. I give him nightly massages in his legs which help with the fluid build up there. While in the hospital this last go-around, they inserted a catheter inside of the sac area around the lung so we can drain at home (since he is on blood thinners, dangerous to have a needle procedure in the future).

Once again, before being released from the hospital, had a visit from his Oncologist, Dr. Death, as I call him, to give us the "your going to die soon."

My husband started the radiation treatments 2 weeks ago. He went back on the Inlyta and after I did research on Morphine Sulfate, reduced his intake of that from 60mg per day to 15mg during the day and 25mg at night.

I am happy and excited to report that as of yesterday, both tumors in the lung and the groin reduced down, his lung capacity is up to 98% (without forced oxygen) and he went swimming yesterday for exercise. His spirits are back up, his appetite in full, etc. I am cautiously optimistic - it has been a very long haul these past 6 weeks, and he has far to go. The goal is always more time on earth - as it is for everyone with "managed" cancer. I just really have to question some of these doctors that refuse the hope aspect - and feel that you need to throw in the towel and accept what they think your fate is. I have found throughout these 9 years, that if you can get with an Oncology team that is research based, they are far more liberal and think outside the box than most. Some Oncologists are mere Pez dispensers, just handing out whatever the latest med is that they know about - but they don't have much more knowledge in the way of what is being tested, etc. We live in the San Francisco Bay Area and I thank God for UCSF and Stanford - both well known for their research in RCC. It will never end in the back of the loved one's mind, or the patient, of time left with this insidious disease. But, as long as there are options and fight to keep going - it makes all the difference in the world!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

NurseRatchit,

I must say I have been very impressed by your moxie, your husband is very lucky to have you fighting with him! If mine ever returns I hope to copy your attitude and success. You don't just rock, YOU ARE A ROCK!

Good luck and Godspeed,

Gary

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