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Worried about my mom - Update

love4life
Posts: 33
Joined: May 2010

Update - I had gotten my mom an appointment with her family doctor because she wasn't feeling well and I wasn't sure where to start. She had her labwork done after lunch and before we could get to her appointment he sent us to the ER (because he isn't a practicing physician at the hospital her oncologist is at). Her hemaglobin was down to 5.6 - they gave her 3 units of blood and fresh plasma as of this morning and the nurse said they are waiting for her labs to come back now. I was unaware that shortness of breath was a sign of low blood count but will now have that info stored in my memory bank as well. Hopefully we will get more answers today.

My mom has been very positive through this entire journey with kidney cancer up to this point. She had a radical neph. 3 years ago almost to the day. Scans were well until last November. At that time a couple of small nodules were found on her lungs in the lower lobe. They watched and redid the scans in April. At that time there were a lot more nodules (they didn't give a number, just said several) and so they did a biopsy. The first one came back inconclusive and unfortunately she was told there was no cancer and she needed to follow up with a pulmonologist. A few days after that they called back and said the dr. wanted another biopsy. But before they had given her the false information the urologist had her meet with an oncologist (This is at Henry Ford Hospital in Detroit). We were really taken back with what she had told us. The urologist told my mom she would probably have 5-7 years but this doctor described a much different picture and didn't offer a lot of hope. My mom, my sister, and myself were very upset, disappointed, etc when we left that meeting. Then my mom thought it was all good and there was no cancer. Then after the 2nd biopsy she contracted pneumonia and was hospitalized locally for a week (we live about 3 hours from Detroit). She met with a local oncologist while in the hospital and really liked him. She decided Detroit was too far to travel if she was feeling sick and didn't care for the oncologist there so she started treatment with the local oncologist. He put her on the exact dose of Votrient the detroit dr. had talked about and her first 3 month scan after taking the medicine was last week. On Wednesday we go to get the results and my mom has told 3 different people that she thinks he will tell her the medicine isn't working. I don't think she wants to give up but I think she's discouraged. I'm hoping the cancer isn't too far gone if the meds aren't working and we can get her some relief from the breathing issues she's having. They are definitely worse than they were before and I'm just really worried about her. I'm thinking about taking her to Cleveland Clinic or Mayo for another opinion if she's willing. I just want to make sure we do everything can to help her. Has anyone else had a bad experience on one and then get great results/improvement with another or at this point will it be to maintain and not get worse?

icemantoo's picture
icemantoo
Posts: 1471
Joined: Jan 2010

love4life,

I am not exactly sure where you are 3 hours from Detroit. I am in the Northern sububrs. Henry Ford hospital has an excellent reputation in both Urology and Cancer treatment. You may want to get a second opinion at the University of Michigan Hospitals, Karmanos or Beaumont Hospital all of which have excellent reputations in this area and all of which are doing research and teaching as well.

Icematoo

love4life
Posts: 33
Joined: May 2010

Icemantoo, we live in the "thumb" of Michigan. I think it's time to get another opinion too. I just was leaning toward the 2 hospitals I mentioned earlier because they are supposed to be ranked #1 and #2 in the nation for kidney cancer and I definitely want to leave no stone unturned while looking for the best possible solution for my mom.

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

love4life,

For what its worth as another Michigander I support your decision to seek 2nd, 3rd, or 4th opinions if necessary. I'm sure you have read foxhd's story, he refused to take no for an answer until he wound up in the MDX trial which has yielded great results, same for Alice and John. Point is, there are new therapies out there and more in the pipeline. If she hasn't already, encourage your mom to read some of the inspirational stories of our members like Donna Lee that have continued to fight well beyond their assigned expiration dates. There is hope and we are getting closer every day to a cure.

Good luck and Godspeed,

Gary

angec's picture
angec
Posts: 621
Joined: Mar 2012

Don't give up or get discouraged. Keep seeking answers. I was told by my mom's surgeon that there is nothing but sutent for RCC and that the disease will definitely take her out, he doesn't know when but it is a certainty. Well, i totally disagree with that surgeon. If he had thought that way then when he did the surgery why did he purposely avoid taking out two positive lymph nodes near the kidney? Your mom might just need to go on some oxygen. Have the lung doctor check her breathing and oxygen levels and see if she needs portable oxygen. This is what we are seeking for my mom at the moment as well. She is 80 and had surgery in March 2012 for her kidney..now they see she still has the two nodes near the kidney that the doctor decided not to remove, and two small 1 cm nodes in each lung. Her breathing was bad ever since the surgery when they told her her lungs were clear. But your mom should not worry, if the votrient isn't working there are many other drugs to try. She has to keep positive and if one doctor doesn't give her the answers she needs, then keep going just like FOX did and find what you need, it is out there. I certainly am doing the same thing with my mom. There is also a new drug that they rushed to the FDA for approval and it is very, very promising with very little side affects. That should be available soon. Tell mom not to worry and let her know there is a lot of progress and motivating stories on this board from people who are LIVING with this disease and know first hand! And you keep positive as well. If mom sees you down then she will worry more, i know it is easier said then done. i put on my game face each time i see mom! Keep her busy. Does she like to knit, crochet, paint, read, take walks? Whatever it is, keep her at it! Don't give up. Keep checking back here on the boards to see all of the positive results others are getting. I am with you fighting for my mom as well. Prayers for you all!

emkat
Posts: 21
Joined: Sep 2012

I hope that you should find a doctor that is positive, hopeful and helps her spirits. While I do appreciate the fact that doctors want to be honest, I think some can lack in their bedside manner and on the emotional side of the patient. I know that waiting is the hardest part and I hope you get good news on Wednesday!

foxhd's picture
foxhd
Posts: 1868
Joined: Oct 2011

We are LIVING with cancer. We CAN do this. Stay tough mom!

Phoenix Rising's picture
Phoenix Rising
Posts: 151
Joined: Jul 2012

All of us want to believe in our physicians. We think of them as knowledgeable, dependable, subject matter experts, and then they tell us we're gonna die. Doctors do not know everything. If they did, they could cure this crap right off the top. So beginning with the fact that they don't know everything, believe they don't know the hour of our demise either.

My onc said kidney cancer is being approached as a chronic disease rather than a life-ending disease, and chronic disease can be managed. One drug works for a while, and if it stops, we start another, and there are several options now, as opposed to the two options we had 5 years ago, and the one option we had all the years before that. Now, my onc doesn't know everything either, but at least he's talking about something I can believe in.

The playing field is changing daily, and your change-makers and trend-benders are right here, typing out words of encouragement. See another doctor who realizes he/ she is not the Lord himself, and help your mom choose to live.

Txgrl
Posts: 24
Joined: Apr 2014

Like the way you think. I am tired of Drs playing God.

I am alive
Posts: 217
Joined: Jul 2012

My onc also approaches RCC as a chronic illness. I noticed it was a urologist, not an oncologist who gave your mother 5-7 years to live. Is this a urologist who specializes in kidney cancer and is up on the latest treatments? Is this urologist intimately aware of the drugs in the pipeline that will be approved in the next couple of years? Many are not. The doc doesn't have a clue how your mother will react to the targeted drug therapies that are out there. She could be stable on one drug for years before trying another. Find an oncologist who is all about RCC. Good luck! Speaking of luck, how lucky your mom is to have a - well I think you are a daughter but I don't really know! Let's say "child" - like you who totally has her back.

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

love4life-Know I'm cheering from the sidelines for you and your mom as well as Angie and her mom. You've received a lot of encouragement and great advice from Gary, Phoenix Rising, I am Alive, Iceman, and many others. Absorb it and heed it. Your and Angie's mom are fortunate to have you and Angie; we all know how overwhelming it can be.

Remember the immortal words of Mother Teresa:

"I know God will not give me anything I can't handle.
I just wish that He didn't trust me so much."

angec's picture
angec
Posts: 621
Joined: Mar 2012

Thank you so much Alice! It is great to have you and the others here to cheer us on!! We know how important it is to encourage the care givers as well as those who are fighting this disease. All of the updates you have been giving us helps us tremendously and we want to thank you for that. You also always seem to save the perfect thing at just the right time! I am very encouraged by your posts and your knowledge! I hope hubby is doing well, please give him a big hug from us all!

Yes, why does God trust us with so much! ;)It is only by His grace and comfort that we move forward.

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