A very awkward subject

SimplyMe
SimplyMe Member Posts: 7
edited March 2014 in Colorectal Cancer #1
I am so upset, not sure how to handle this. My husband was recently diagnosed with crc with "multiple" liver mets. After tests and the like, he was told that he only has about 2 years to live, and the only thing that can be done is to have chemo every other week until he dies. I of course insisted on a 2nd opinion and got virtually the same answer. I have been reading the wonderful posts on this website, and it has really given me a lot of hope that something can be done, and that this is not necessarily a death sentence for my husband. I have read a lot that says that crc can become a chronic disease versus a fatal disease, but is finding it very difficult to find anyone willing to go the extra mile. We have very good health insurance, and I know that that is one of the first things doctors and hospitals want to know about, but I'm starting to worry that our race may play a part in the quality of care he receives. We are African American and I have read that there is a huge disparity in the quality of health care we receive, but I never thought it was true until now. We live in the south, but in a very progressive state. I am researching other doctors now, and will ask about the different treatments outside of chemo, but including surgery (after mets have shrunk) and possible radiofrequency ablation.

My question is, how do I get the doctors to go the extra mile, and try whatever it takes to help my husband? Is it just a matter of finding the right doctors & facilities, or is racism too ingrained to make a difference?

Needing some honest answers,

Rose
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Comments

  • jillpls
    jillpls Member Posts: 238
    go to MD anderson
    HI
    I've heard that MD Anderson is a wonderful facility and I would have a hard time beliving that they would exclude you because of race. They are a top notch hospital. I'm fortunate to go to UCSF. Stick with the top notch professional people. Good luck and God be with you both. My dr's tell me it's a chronic disease and I've had mets to the lung and liver.
  • mom_2_3
    mom_2_3 Member Posts: 952
    Second opinion
    Rose,

    I am not sure of why the DRs have given you only a chemo option. I also had multiple liver mets when I was diagnosed in November 2008. 4 rounds of FOLFOX shrunk my mets between 40% and 50% and I was able to have my liver surgery in February. I am currently NED and doing adjuvant chemo. At my first oncology appointment I was told I was inoperable but I got myself over to Memorial Sloan Kettering for a second opinion and found a DR that was willing to treat me for a cure as opposed to palliation.

    So, it's hard to say whether your husband will be resectable. A doctor cannot be 100% what will happen when he starts chemo as he may have a wonderful response. Where the mets are in the liver is important but I have met numerous people in the office where I go who have battled their liver mets into submission, many using something called an HAI pump which directs chemo right to the liver. I had one of these put in during my liver surgery. Google "HAI pump" or "hepatic arterial pump" and let me know if you have any questions.

    So my advice is to get yourself to a comprehensive cancer clinic. Can you get to NYC to go to Memorial Sloan? Was your opinion about the liver mets from an oncologist or a surgical oncologist that deals primarily with the liver. You would be surprised at the difference in opinions between the two that you may find.

    As an answer to your question about doctors going the second mile....

    My opinion is that some doctors will and some won't go that extra mile as I personally had that experience. Whether your doctor is or isn't, who knows. Whether it has to do with race I would have no idea. But I do know that where I am treated there are folks of every nationality and ethnic group in the waiting room and I am quite certain that all receive the same standard of care. If you need/want any more information about MSK post here as a number of us have been treated at MSK.

    All the best to you Rose...

    Amy
    (someone that loves the name Rose so much that she named her daughter Elizabeth Rose...)
  • SimplyMe
    SimplyMe Member Posts: 7
    mom_2_3 said:

    Second opinion
    Rose,

    I am not sure of why the DRs have given you only a chemo option. I also had multiple liver mets when I was diagnosed in November 2008. 4 rounds of FOLFOX shrunk my mets between 40% and 50% and I was able to have my liver surgery in February. I am currently NED and doing adjuvant chemo. At my first oncology appointment I was told I was inoperable but I got myself over to Memorial Sloan Kettering for a second opinion and found a DR that was willing to treat me for a cure as opposed to palliation.

    So, it's hard to say whether your husband will be resectable. A doctor cannot be 100% what will happen when he starts chemo as he may have a wonderful response. Where the mets are in the liver is important but I have met numerous people in the office where I go who have battled their liver mets into submission, many using something called an HAI pump which directs chemo right to the liver. I had one of these put in during my liver surgery. Google "HAI pump" or "hepatic arterial pump" and let me know if you have any questions.

    So my advice is to get yourself to a comprehensive cancer clinic. Can you get to NYC to go to Memorial Sloan? Was your opinion about the liver mets from an oncologist or a surgical oncologist that deals primarily with the liver. You would be surprised at the difference in opinions between the two that you may find.

    As an answer to your question about doctors going the second mile....

    My opinion is that some doctors will and some won't go that extra mile as I personally had that experience. Whether your doctor is or isn't, who knows. Whether it has to do with race I would have no idea. But I do know that where I am treated there are folks of every nationality and ethnic group in the waiting room and I am quite certain that all receive the same standard of care. If you need/want any more information about MSK post here as a number of us have been treated at MSK.

    All the best to you Rose...

    Amy
    (someone that loves the name Rose so much that she named her daughter Elizabeth Rose...)

    Thanks so much
    for the information. I have been doing research on MD Anderson & Sloan Kettering. Neither are close to us, but both are in network for our insurance. My questions are: do you have a onc dr that you work with near your home, or just Sloan-kettering? I'm trying to figure out how you work out the need to fly to NY, finding a place to stay etc. I believe I read that they do have partnerships with hotels around the area where the patient & loved ones can stay while having tests & procedures. How did it work for you?

    Rose

    PS. It was years before I came to appreciate my name. Now, I love it!!
  • kimby
    kimby Member Posts: 797
    Opinions
    Rose,

    Keep getting opinions until you find hope. It's out there. If the goal your husband's doctor has is 2 years, how will he ever get more? That's like plotting a map for Dallas and expecting to end up in LA. I have had to advocate and convince many very progressive doctors that I was a good candidate for more procedures. I now have a very aggressive team that has the tumor board of a major comprehensive canzer center cheering me on and allowing treatments that they would only consider if it was curative. For me, it will buy me time but is not likely to offer a true cure. I've spoken at length to two very experienced onc about the importance of patient self-advocacy. They both agreed that few patients understand how important that is or know how to go about it. The facility, tumor board and doctors have to hit certain success numbers to continue cutting-edge treatment. Without that, even more of us lose the battle. They are looking for the best candidate, show them that is your husband.

    I'm not sure if your race is playing a part or not. I can only tell you my experience as a white woman in middle America. I'm 45 years old and willing to try just about any treatment that is reasonable for me. I don't like stats because they don't apply to me at all, but I do look at 'odds' when choosing treatment plans. My onc team members are each part of MY team - I am the coach. They are all aware of this. I negotiate tests, treatment plans and how I get results. I set the pace. I do a LOT of research before doctor appointments so I can ask intelligent questions and understand what they are telling me. I take someone with me to take notes (that would be you, for your husband) and I take notes myself. I get hard copies of every test, scan and all bloodwork prior to meeting with the doctor. (This part can be tricky as doctors don't like to fax a CT scan to you with bad news. If you need help with that, PM me and I'll give more details)

    Here is the link to the NCI Comprehensive canzer Centers in the US. This doesn't mean that every great facility is listed but this is a wonderful place to start and you know you'll be at a top center. When I go for opinions I am really interviewing the doctors, their staff and the facility. Their opinion is important but I won't go to them unless they fit with my philosophy and attitude. I don't care AT ALL about bedside manner, but I've found that to be unusual for most people. My team is full of geeky,science nerds with very odd humor if any. I am usually the only patient in the waiting room that sees any personality traits in them because I have 2 brothers that way. I guess I speak 'geek' even though my oncs don't speak 'human'. LOL

    http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html

    Good luck. This is an overwhelming time, I know. I hope we can be of help to you and your husband.

    Hugs,

    Kimby
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Wish you well
    Rose, I wish you and your husband the best, and I sincerely hope race is not playing any part in this.

    If you do decide to go to a cancer center that's far from home, check with the American Cancer Society and see if they can help you with a place to stay.

    *hugs*
    Gail
  • 2bhealed
    2bhealed Member Posts: 2,064
    the Mayo Clinic
    Hi Rose,

    if you can swing it, I would highly recommend trying the Mayo Clinic up here in Minnesota. It's in Rochester and people of ALL races come from ALL over the world to get their care here. It runs like a Swiss Watch. You have your tests done in the morning and you meet with your doctors in the afternoon of the same day--NO WAITING!!! It's fabulous.

    I LOVE my oncologist there and if you PM me I can give you his name. My surgeon too was fabulous.

    Mayo is so international that all the colors of the rainbow are represented on both sides--doctors and patients. The town is so sympathetic to ill people too. It's all comforting when you're so sick. The facility is beautiful.

    I wish you the best and I am sorry about your husband, but welcome to the boards.

    peace, emily 7 1/2 year stage III colon cancer survivor (who didnt do any chemo) (I did CHEMIA instead which is "juice of the plant")
  • 2bhealed
    2bhealed Member Posts: 2,064
    kimby said:

    Opinions
    Rose,

    Keep getting opinions until you find hope. It's out there. If the goal your husband's doctor has is 2 years, how will he ever get more? That's like plotting a map for Dallas and expecting to end up in LA. I have had to advocate and convince many very progressive doctors that I was a good candidate for more procedures. I now have a very aggressive team that has the tumor board of a major comprehensive canzer center cheering me on and allowing treatments that they would only consider if it was curative. For me, it will buy me time but is not likely to offer a true cure. I've spoken at length to two very experienced onc about the importance of patient self-advocacy. They both agreed that few patients understand how important that is or know how to go about it. The facility, tumor board and doctors have to hit certain success numbers to continue cutting-edge treatment. Without that, even more of us lose the battle. They are looking for the best candidate, show them that is your husband.

    I'm not sure if your race is playing a part or not. I can only tell you my experience as a white woman in middle America. I'm 45 years old and willing to try just about any treatment that is reasonable for me. I don't like stats because they don't apply to me at all, but I do look at 'odds' when choosing treatment plans. My onc team members are each part of MY team - I am the coach. They are all aware of this. I negotiate tests, treatment plans and how I get results. I set the pace. I do a LOT of research before doctor appointments so I can ask intelligent questions and understand what they are telling me. I take someone with me to take notes (that would be you, for your husband) and I take notes myself. I get hard copies of every test, scan and all bloodwork prior to meeting with the doctor. (This part can be tricky as doctors don't like to fax a CT scan to you with bad news. If you need help with that, PM me and I'll give more details)

    Here is the link to the NCI Comprehensive canzer Centers in the US. This doesn't mean that every great facility is listed but this is a wonderful place to start and you know you'll be at a top center. When I go for opinions I am really interviewing the doctors, their staff and the facility. Their opinion is important but I won't go to them unless they fit with my philosophy and attitude. I don't care AT ALL about bedside manner, but I've found that to be unusual for most people. My team is full of geeky,science nerds with very odd humor if any. I am usually the only patient in the waiting room that sees any personality traits in them because I have 2 brothers that way. I guess I speak 'geek' even though my oncs don't speak 'human'. LOL

    http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html

    Good luck. This is an overwhelming time, I know. I hope we can be of help to you and your husband.

    Hugs,

    Kimby

    Kimby
    YOU TOTALLY ROCK!

    peace, emily
  • kimby
    kimby Member Posts: 797
    SimplyMe said:

    Thanks so much
    for the information. I have been doing research on MD Anderson & Sloan Kettering. Neither are close to us, but both are in network for our insurance. My questions are: do you have a onc dr that you work with near your home, or just Sloan-kettering? I'm trying to figure out how you work out the need to fly to NY, finding a place to stay etc. I believe I read that they do have partnerships with hotels around the area where the patient & loved ones can stay while having tests & procedures. How did it work for you?

    Rose

    PS. It was years before I came to appreciate my name. Now, I love it!!

    The Team
    Rose,

    After re-reading Amy's response I think I'd like to add one more thing to mine. (Amy is wonderful and gives great advice,huh?) She asked about what kind of oncologist you've spoken with. That is key. The 'team' needs to be (at least) a medical onclologist, a radiation (or interventional) oncologist, and a surgical oncologist that specializes in liver mets. They need to be used to working together. They get much more done, can advocate with tumor boards more effectively and respect each others opinions in a whole new way.

    Kimby
  • snommintj
    snommintj Member Posts: 601
    2bhealed said:

    the Mayo Clinic
    Hi Rose,

    if you can swing it, I would highly recommend trying the Mayo Clinic up here in Minnesota. It's in Rochester and people of ALL races come from ALL over the world to get their care here. It runs like a Swiss Watch. You have your tests done in the morning and you meet with your doctors in the afternoon of the same day--NO WAITING!!! It's fabulous.

    I LOVE my oncologist there and if you PM me I can give you his name. My surgeon too was fabulous.

    Mayo is so international that all the colors of the rainbow are represented on both sides--doctors and patients. The town is so sympathetic to ill people too. It's all comforting when you're so sick. The facility is beautiful.

    I wish you the best and I am sorry about your husband, but welcome to the boards.

    peace, emily 7 1/2 year stage III colon cancer survivor (who didnt do any chemo) (I did CHEMIA instead which is "juice of the plant")

    South Carolina?
    If you live near spartanburg sc, we have an excellent cancer center. It is affiliated with md anderson. I too was given little chance. Just 2-3 months. I'm now approaching NED.
  • kmygil
    kmygil Member Posts: 876
    Hi Rose,

    I am so sorry to learn of your husband's diagnosis. I live in Georgia and am of mixed race, and I am convinced I got the very best care available. I don't think race plays a part in it if you educate yourself and find the right places to go. Emory has just been named a major cancer center, if you live in Georgia. From what I hear, though, MD Anderson is cutting edge, although I don't know if you will be able to travel.

    I don't know where you are, but there are OPTIONS. I am sure that a lot of people will have good suggestions for you depending on your geographic location. Just bear in mind as you and your husband travel this road that numbers are just that--numbers. Statistics that you read are usually old, because new treatments become available all the time. Each of us is different, and each of us are qualified for and/or able to do different treatments.

    Please keep coming to this board. It kept me going when nothing else could during my travels with cancer. You and your husband are on my prayer list, as is everyone else on this board.

    Hugs,
    Kirsten
  • kmygil
    kmygil Member Posts: 876
    By the way....
    By the way, I just want to tell you that you are a hero already. Loving caregivers are AWESOME!

    Kirsten
  • mom_2_3
    mom_2_3 Member Posts: 952
    SimplyMe said:

    Thanks so much
    for the information. I have been doing research on MD Anderson & Sloan Kettering. Neither are close to us, but both are in network for our insurance. My questions are: do you have a onc dr that you work with near your home, or just Sloan-kettering? I'm trying to figure out how you work out the need to fly to NY, finding a place to stay etc. I believe I read that they do have partnerships with hotels around the area where the patient & loved ones can stay while having tests & procedures. How did it work for you?

    Rose

    PS. It was years before I came to appreciate my name. Now, I love it!!

    Proximity
    Rose,

    I am fortunate enough to be 25 miles from NYC so getting into Sloan only takes about an hour (2 hours if I leave at rush hour). But, we do have a smaller cancer facility in our local hospital that is only 5 miles away. That is where I went for my first consult.

    When I started at Sloan my oncologist said I could take treatments at the local facility but I had such a horrible association to that place (it's where the oncologist was that told me I was inoperable) that I had no desire to go back there. I would rather drive into the city and be in a place that has such a positive feeling. I have met others at my center, however, that have our Sloan oncologist call the shots with respect to treatment but the treatments are done at their local facility. So they only fly in for CT scans and perhaps some specialized treatments. But the bi-weekly chemo treatments can be local.

    One thing that Sloan does that isn't done in many other places is the HAI pump which is a chemo pump inserted into the abdomen and it directs chemo right to the liver. It can be used prior to surgery to bring liver mets under control and allow for resection. It can also be used after surgery as adjuvant treatment to kill microscopic cancer cells in the liver after surgery (which is what I am doing). I have met and know of a number of people whose livers were virtually covered in tumor that have either become resectable through this treatment or have had their tumors shrunken and go down from numerous to 1 or 2 left. If you can get a referral to Sloan I would take it that opportunity to at least have them review your husband's case.

    If you do go for consults/treatment at centers that are not close to you there are wonderful groups that can help you with travel (like Corporate Angels) and accommodations (most cancer centers will have a list of places that offer free or reduced housing). If you came up here you would be welcome to stay with us in NJ.

    One other thing I do love about where I am treated is that the floor I go to is primarily colon cancer. So when I sit down I know I can pretty much strike up a conversation with someone that is going through the same treatments as I have. Many I meet are years out for their diagnosis and simply coming in for follow-up bloodwork or CT scans. It is amazing how meeting people that are doing great with a Stage IV diagnosis can have a tremendous impact on your psyche. Our best friend's father is now 5 years out and NED after a Stage IV diagnosis and seeing him and talking with him gives me great hope for my own future. I feel like if he can do it, I can too. Also, the people that treat me do nothing but colon/liver cancer. So they see people making it through everyday. When I think back to that original oncologist who so cavalierly told me I had a timeline I give him some slack as I know he treats every kind of cancer. If he is treating colon, liver, lung, breast, lymphoma, prostate, etc. then he won't tend to see as many colon patients and therefore not see as many do well. Additionally, there is no way he can have the expertise in colon treatments as my oncologist has.

    When I first met my oncologist I asked her my prognosis. She said (and I paraphrase) that she didn't know, how could she know. Everyone is different in how they respond to treatment. All she could do was bring to bear her experience in treating me but that I could do my own part by exercising as that has been shown to help prevent recurrence.

    This is my oncologist (http://www.mskcc.org/prg/prg/bios/123.cfm). If you google her name you will see she is well-known in the colon cancer world. This was my liver surgeon (http://www.mskcc.org/prg/prg/bios/708.cfm). Don't let his youthful (and really good looks) fool you. He is top of his game. This was my colon surgeon (http://www.mskcc.org/prg/prg/bios/12.cfm). Top-notch guy and straight shooter. In addition to them I have had phenomenal care from the moment I started there. Everyone, from reception to scheduling to chemo nurses to radiologists is great. Let me know if you have any additional questions about MSK.

    Rose, it seems like you are taking steps to research other treatment locations which is much in your favor. I read a study that showed that people that go greater than 10 miles from their home have more favorable outcomes. The postulated reason is that those people get out of their comfort zone and will look for the best and not the most convenient treatment. Don't ever lose sight of the fact you need to advocate (as Kimby so eloquently stated) for your husband and your family.

    Amy

    PS I dont' know if you find strength in prayer but I will keep you in my own prayers. The night before I started my first chemo treatment I went to a healing session and the word of God as spoken by the leader of that meeting was that God wanted to heal "neck pain, puppies and cancer of the lower body and liver." I was amazed as there were only a few people there and I certainly fit the last ailment. When the pastor laid his hands on my abdomen I felt a burning sensation that I had never felt before or since. 4 treatments of FOLFOX and my liver mets shrunk 40-50%. 1 more treatment of FOLFOX and then had my liver surgery. The pathology from surgery indicated the largest liver met was 80% smaller and 90% necrotic or dead. Some might say that the chemo did that but I believe there was another Power at work.
  • PhillieG
    PhillieG Member Posts: 4,866
    WOW
    I would hope that it is about finding the right care. If doctors are discriminating against you and your husband I would hope that they get what is coming to them. And it wouldn't be good.
    I would get a 3rd and 4th and 5th because from what you said here there is no way he should be looking at this than anything other than a treatable disease. I had extensive liver mets and they were chemo'd then removed. Also, no professional doctor (in MY opinion) should tell anyone anything about when they are going to die. They don't know. Period.
    Good luck, keep us posted
    -phil
  • jenben59
    jenben59 Member Posts: 136
    simply me...
    Dear Rose, Pardon my language, but "don't stand for that crap". I go to MD Anderson, they are top of the line and it is such an amazing, kind and caring place...they don't care about race...they care about the patient, family and cure. You will be treated with care and respect. My neurosurgeon is from India, my proctologist is from India, my oncologist has an Egyptian background, some of the nurse are oriental/Philipino(SP), many of the social workers, office ladies, insurance people are African-American. If you don't mind me asking, where do you live? If you can, Google and find the closest MD Anderson cancer center/hopital/clinic near you. If you need some help, Tuesday, I'm due for my chemo treatment I'll give you their contact number, if you want and you can call them or I can give them your contact information and these people follow up! Please let me know if I can help.
  • lmliess
    lmliess Member Posts: 329
    Just another thought
    I just had liver resection surgery at MD Anderson in Houston for 2 liver mets. My Dr, Steven Curley was incrediable and never once made me feel like this was the end for me. In fact he has patients 10 - 15 years out from this stuff. And he is great...he is incredibly smart (google Steven Curley and 60 minutes and see what he is working on. It is amazing) and has a fun bedside manner. We live in Kansas and drove the 13 hours to an from for him. He is now working with my Oncologist here for follow up chemo.

    Just my 2 cents from my experience....
  • steve g
    steve g Member Posts: 58 Member
    Mayo Clinic
    Mayo also has a new hospital in Jacksonville Florida which is where I was operated on and as said before it runs like clock-work. You can go on-line and find out about them. Best of luck to you and your husband. Steve
  • chynabear
    chynabear Member Posts: 481
    steve g said:

    Mayo Clinic
    Mayo also has a new hospital in Jacksonville Florida which is where I was operated on and as said before it runs like clock-work. You can go on-line and find out about them. Best of luck to you and your husband. Steve

    Others have already given
    Others have already given great advice on seeking hope in finding a comprehensive cancer center, so I'm not sure I can add much... but,

    MD Anderson has worked with travel airlines and hotels and apartments to reduce rates to cancer patients. Also, if you (or anyone) must travel for medical treatment, keep track of mileage and expenses. If you itemize on your taxes, you may be able to use this as a deduction (every little bit helps).

    Also, many oncologists specialize, which means that some are more geared towards specific cancers. Make sure you are seeing an oncologist who specializes in Colorectal cancer. I have also heard stories where one surgeon turned away a person where a more specialized surgeon was able to complete the surgery.

    I may be naive, but I really hope that your race is not the reason for a lack of care. I know this world is a long way from perfect, but I would like to think that you wouldn't get less care than someone else would.

    I pray you find that doctor to go the extra mile for you.

    I'm not sure if you feel comfortable posting where you live near, but someone living in that area may be able to suggest a team of doctors to you.

    Patricia
  • snommintj
    snommintj Member Posts: 601
    steve g said:

    Mayo Clinic
    Mayo also has a new hospital in Jacksonville Florida which is where I was operated on and as said before it runs like clock-work. You can go on-line and find out about them. Best of luck to you and your husband. Steve

    Green
    I'm convinced that cancer drs and centers only see the color green. if you have decent insurance you'll find someone to treat you
  • SimplyMe
    SimplyMe Member Posts: 7
    snommintj said:

    Green
    I'm convinced that cancer drs and centers only see the color green. if you have decent insurance you'll find someone to treat you

    Thanks so much to everyone
    You all probably don't realize how much you have helped my husband and me! You have enabled us to focus on what we need to do to get him the best help available. Someone asked where we live. We live in Georgia, and the 2nd opinion was actually done at Emory. However, this dr was a medical oncologist, and I think that you are right, we need to find a surgical oncologist specializing in liver mets. Also, I got online this morning, and I'm looking at H Moffitt Cancer Center in Florida, but really want to take him to Sloan-Kettering in NY. I am going to figure out how to make this happen!

    A note on the race issue. Although I am from the south, there have been very few occasions in my life where I felt that my race played a part in a service or treatment that I did or did not receive, and I hope it isn't the case now. What I think it really is is that everyone that has responded to me on this board has really shown bravery and acted as their own advocate, and I think that's what we have to get used to doing. Noone tells you that you need to do this, that or the other when you or someone you love has cancer, but through your posts, I now see that we have to ensure that we are getting the right treatment for my husband.

    Once again, thank you and I will keep you all posted on what is going on, or if I we just need encouragement. You all have been wonderful! I hope we can return the favor soon.

    Have a good day!

    Rose
  • Paula G.
    Paula G. Member Posts: 596
    Your Post
    I just joined this club last week. My husband found out he has colon cancer stage 4 last November. He had surgery to remove it from his colon. He also has liver mets and some in his lungs and a small spot on his adrenal gland.
    His Doctor said five years but not ten. This was only after my husband asked what he really thought. He really like his doctor and I like him also. I feel he will do everthing he can to give him a long life.
    I would keep looking for a doctor that will help and do it fast. You have to fight. RACE should never play into it. I know it does in some cases. Don't give up. Paula G.