Please help!!!! I need as much information as I can get.

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Please help!!!! I need as much information as I can get.

by Cowgirl_Wishes on Thu Jun 25, 2009 12:00 AM

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My dad was diagnosed 3 weeks ago with lung cancer stage IIIB.  It is in the lining of his lung on the right side around the rib cage.  They can't see it with x-rays to know where it is to do radiation.  They say there's no surgery to do.  He starts Chemo next week, but the doctor doesn't think it will help.  Nothing shows in the blood to know if he's getting worse or better once he has the Chemo the doctor said.  They said they don't think it has spread anywhere else.  He had a pint of fluid in his right ling that they drained.  Is there anything that can be done that the doctor isn't telling us?  He said at best he'd have 2 yrs. but that was stretching it, doesn't sound like maybe even a year.  He is so scared and wants to get help if there's help to get.  We don't know where to turn, what facilities would be the best, what treatments, support groups, etc.  We are in the St. Louis, MO area.  He's losing weight, no appetite, pain in his rib area on the right side, very tired all the time, wears out very easy just walking across the room.  If anyone has any information they could share with me, we would be so appreciative to you!  Please help us!  I hope tohear from as many of you as possible.  Thank you in advance for any information.

RE: Please help!!!! I need as much information as I can get.

by melian on Fri Jun 26, 2009 12:00 AM

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Hi Cowgirl wishes,

My mother just got diagnosed with something similar. She also has NSCLC and it was found when they drained fluid out of her right lung and it was positive for cancer cells. That was exactly how my mother was with a horrible cough and shortness of breath because of these fluid that kept building up in her right lung which was a pleural effusion. Is this what the doc found? My mother's had not spread anywhere else either but because she had a positve cancer cells in the pleural space that is why she is at the same stage as your father. We had original went to see an oncologist here locally and they gave us absolutely no hope! So we went and got a second opinion in Houston at MD Anderson and they have given us sooo much hope. Her doc is aggressive and he says he doesn't know how much time my mom has because everything goes by old textbook and doesn't include all the new research drugs. He said there are people still out there and it has been 5 years but everyone is different. My mother was started on a new research drug called to Dasatinib that is being researched in pts with cancer in the pleural space like your father. This is they only treatment that he has been on since she got diagnosed 2/09 and it is working and keeping the cancer from growing/spreading. This drug does have some side effects but are very small compared to the side effects to the Chemo given through the IV. You all should definetly get a second opinion until you all find a doc that is aggressive and willing to fight with you all like we did. Best of luck. Please let me know if you have any other questions. I know how devasting this kind of news is!!

GOD Bless you and your family

- Missy

RE: Please help!!!! I need as much information as I can get.

by CancerStrike2 on Fri Jun 26, 2009 12:00 AM

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On 6/25/2009 Cowgirl Wishes wrote:

My dad was diagnosed 3 weeks ago with lung cancer stage IIIB.  It is in the lining of his lung on the right side around the rib cage.  They can't see it with x-rays to know where it is to do radiation.  They say there's no surgery to do.  He starts Chemo next week, but the doctor doesn't think it will help.  Nothing shows in the blood to know if he's getting worse or better once he has the Chemo the doctor said.  They said they don't think it has spread anywhere else.  He had a pint of fluid in his right ling that they drained.  Is there anything that can be done that the doctor isn't telling us?  He said at best he'd have 2 yrs. but that was stretching it, doesn't sound like maybe even a year.  He is so scared and wants to get help if there's help to get.  We don't know where to turn, what facilities would be the best, what treatments, support groups, etc.  We are in the St. Louis, MO area.  He's losing weight, no appetite, pain in his rib area on the right side, very tired all the time, wears out very easy just walking across the room.  If anyone has any information they could share with me, we would be so appreciative to you!  Please help us!  I hope tohear from as many of you as possible.  Thank you in advance for any information.

I think all the lung cancer patients at some pt will develop this pleural build up thru out the course.  Since it is close to the rib & pain there, pls ask the dr to immediately give him Zometa * bone pain reliever and strengthing drug * - make sure infusing at least 45 minutes or it will b painful be4 it will crack.  In the mean time ask for licoderm pain patches to relieve the pain *last up to 12 hrs*.  U can also ask for hydromorphone to release his pain - however pls do not abuse it is addictive as it is a morphine !    Do not ever let him fall at all - once he fell he will break ribs and spine bones which is very bad, he could be disable afterward.  Got him a walker assistance rightnow.

Also, if he starts loosing a lot of weight, pls think about adding G-tube to get him more appropriate nutrients to fight cancer.  Once a day would help. Consume more calcium pls. 

During chemo, avoid using metal spoon/fork to eat food. It makes taste very metal.  Use plastic one instead.   Eat plenty of berry fruits family to increase his immune system as it adds in antioxidants.   Drink green tea *matcha ingredient* with a few slice gingers.  Fresh Gingers would help to increase his appetite but not over done ok.  U can either boil it, add it in tea, cook with meal with a few slices per intake.  Maitake / Shitake Mushroom is also help to boost his immune system too.  U can try the purple mushroom defense herbal pill to help him combat this disease. Eat more purple stuf ie purple cabbage, potatoe, grape, dark red onion, dark dark red skin apple...

If he often got difficult of breathing, pls ask for breathing treatment to break the muccus, phlegm build up inside. If it is getting worst (add in cant swallow foods and cough during eating) check his esphogasus area for lesion growth or narrow airway to re-open again...

2nd thought, why cant he try the Tarceva along or as first line treatment???  Chemo is toxic and if a body is weak and low immune it would b tough.  Pls do note after 2nd round of chemo u can tell if chemo drugs work or not and ask the dr to change to something else instead sticking in with same drugs.

U need to prepare him in advance prior going to chemo.  Ask for flu / pneumonia / shingle shots prior the starting chemo - pls insist to have it.  Mainly he needs to be STRONG in immunity to fight hard.

Check caring.com for additional info on chemo procedure and recommendations.

Regards and best wishes,
Victoria

RE: Please help!!!! I need as much information as I can get.

by CancerStrike2 on Fri Jun 26, 2009 12:00 AM

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On 6/26/2009 melian wrote:

Hi Cowgirl wishes,

My mother just got diagnosed with something similar. She also has NSCLC and it was found when they drained fluid out of her right lung and it was positive for cancer cells. That was exactly how my mother was with a horrible cough and shortness of breath because of these fluid that kept building up in her right lung which was a pleural effusion. Is this what the doc found? My mother's had not spread anywhere else either but because she had a positve cancer cells in the pleural space that is why she is at the same stage as your father. We had original went to see an oncologist here locally and they gave us absolutely no hope! So we went and got a second opinion in Houston at MD Anderson and they have given us sooo much hope. Her doc is aggressive and he says he doesn't know how much time my mom has because everything goes by old textbook and doesn't include all the new research drugs. He said there are people still out there and it has been 5 years but everyone is different. My mother was started on a new research drug called to Dasatinib that is being researched in pts with cancer in the pleural space like your father. This is they only treatment that he has been on since she got diagnosed 2/09 and it is working and keeping the cancer from growing/spreading. This drug does have some side effects but are very small compared to the side effects to the Chemo given through the IV. You all should definetly get a second opinion until you all find a doc that is aggressive and willing to fight with you all like we did. Best of luck. Please let me know if you have any other questions. I know how devasting this kind of news is!!

GOD Bless you and your family

- Missy

According to Wiki, it said that drug was used for other cancer type??  Watch out on its toxicity level.

Regards,

Victoria

------

Dasatinib, also known as BMS-354825, is a drug produced by Bristol-Myers Squibb and sold under the trade name Sprycel. Dasatinib is an oral dual BCR/ABL and Src family tyrosine kinases inhibitor approved for use in patients with chronic myelogenous leukemia (CML) after imatinib treatment and Philadelphia chromosome-positive acute lymphoblastic leukemia (Ph+ ALL). It is also being assessed for use in metastatic melanoma.

 

[edit] Efficacy

In a Phase I dose escalation study published in June 2006, dasatinib was tested in patients who were resistant to or who could not tolerate imatinib.[2] Complete hematological responses[3] were seen in 37 of 40 patients with chronic-phase CML. Major hematologic responses[4] were seen in 31 of 44 patients with accelerated-phase CML, CML in blast crisis, or Ph+ ALL.

 

[edit] Molecular Targets

The main targets of dasatinib, are BCRABL, SRC, Ephrins, GFR.

 

[edit] Duration of benefit

Responses were maintained in 95% of patients with chronic-phase CML, with a median follow-up time of >12 months. In patients with accelerated-phase CML, 82% remained in remission, although with a median follow-up of only 5 months. Nearly all patients with CML in blast crisis or Ph+ ALL relapsed within 6 months.

 

[edit] Susceptible genotypes

Responses were seen in patients with all BCR/ABL genotypes, with the exception of T315I mutation, which confers resistance to both dasatinib, nilotinib and imatinib in vitro.

Recently Chemgenex released results of their open label Phase 2/3 study (CGX-635-CML-202) which investigated the use of omacetaxine, administered subcutaneously in CML patients who had failed imatinib and who have the highly drug resistant T315I kinase domain mutation.

Dr. Jorge Cortes, MD, Professor of Medicine and Deputy Chair in the Department of Leukemia at The University of Texas, MD Anderson Cancer Center, a lead investigator in the study, presented the data. Dr. Cortes said, “It appears that omacetaxine was well tolerated in this study and durable hematological and cytogenetic responses were observed in some CML patients with the T315I mutation.” He added that “Several novel drugs have already been investigated in this difficult-to-treat population, but they have not had a reasonable risk:benefit ratio. These results suggest that omacetaxine may represent the first viable treatment option for this population of patients who currently have no established treatment options.”

 

[edit] Toxicities

Neutropenia and myelosuppression were common toxic effects. Fifteen patients in the above-mentioned study developed pleural effusions, which were felt to be a side effect of dasatinib. Some of these patients required thoracentesis or pleurodesis to treat the effusions. Other adverse events included mild to moderate diarrhea, peripheral edema, and headache. A small number of patients developed abnormal liver function tests which returned to normal without dose adjustments. Mild hypocalcemia was also noted, but did not appear to cause any significant problems.

RE: Please help!!!! I need as much information as I can get.

by Chessie on Fri Jun 26, 2009 12:00 AM

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Get another opinion ASAP.  There are so many new drugs out there that I'm sure they can find one that will help.  What about Tarceva?  Have they mentioned that?  If not, ask them about it.  It is chemo in pill form.

Keep looking until you find an oncologist with a positive attitude that is willing to fight with you.

As for the timeline they gave you, don't pay any attention to it.  It is a guess at best.  No one but God can answer that question.

I was told stage 4 and given 6-12 months and that was almost 3 YEARS ago so they really don't know.

Good luck and God Bless

RE: Please help!!!! I need as much information as I can get.

by allegro on Wed Jul 01, 2009 12:00 AM

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I can't tell you much about my history....I'm new here....have Stage IV non small cell...etc.  Am participating in a clinical trila with Pfizer...I'm taking the "target" drug (NO Name...only a #)....

Try to find a NICE WAY to  let you oncologist(s) know what I told mine....

"I realize that I have a terminal condition....but do not look on me as terminal....look on me as a terminal patient who is going to live... so let's do what we have to to make that happen..."

B.T.W. the comparison drug is tarceva.......I've been on the "target" for 12 days now....and am feeling really good....saw the "team" 2 days ago and they are really enthused..i.e. very minimal side effects....small "tolerable" rash on my nose....a loose BM every several days....but my activity level is greatly increased.....

ED

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