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Guest Cindy

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I have been reviewing the posts just trying to familiarize myself with this word Cancer and what it means. And, I've been hesitant to post because you all seem to have it so together and know what you are talking about. But, I feel (like many of you) that our lives have been a roller coaster for the last several months and I am hoping you can help.

My mother has had heart arrhythmia for the last year for which she has been treated with medication. However, during the month of June, she was having quite a bit of trouble breathing and her heart rate was out of control. They put her in the hospital on June 28th and during this week, they did a scan and found that she had a tumor on her right lung. They also found that she had a tremendous amount of fluid.

After a bronschoscopy and series of scans, they found that she had SCLC in her right lung. We waited for a Lung Specialist so it was several weeks before we were able to see an Oncologist. At the first appointment, they diagnosed her with Limited SCLC. At the 2nd appt (with no additional scans or info), they changed the diagnosis to extensive SCLC because she had the large tumor (size of lemon) and several smaller areas still within the right lung. Note: the fluid did not show any cancer. Based on everything we have read, it seemed like it should be still diagnosed as limited because it was contained within the one lung...however, oncologist disagreed.

She had her first chemo treatment on August 23 (3 days) and on August 31st, she was admitted to the hospital for complications...extensive nausea and dehydration. She was in the regular section of the hospital for 2 days, spent 13 days in ICU and is now back in the regular section. During this time, she developed pneumonia in the good lung, had the right lung collapse, shoulder has been "disjointed?", blood clots in both legs and right arm, extensive constipation and is just starting physical therapy because she hasn't been able to walk. Today, they are giving her blood because they say that her hemoglobin levels are low.

Prior to June 28, my mom was a healthy 69 year old lady that was being treated for a high pulse rate, but it never got her down. Now this...

My questions:

1) is this reaction to chemo normal?

2) is it normal to labeled extensive SCLC when the cancer is in only one lung?

3) they are saying that they can't do radiation because it has been declared extensive...is this normal?

4) she was scheduled for her 2nd round of chemo on 9/13; but, of course, they have held off? What is the normal after having this type of reaction

I'm sorry if I have not made any sense. You hear of cancer, but you never really know what it involves until you are in it. We do have a 2nd opinion approved by our insurance; but, so far, we have had to cancel 2 appointments because Mom has of course been in the hospital. Also, has anyone heard of the Burzynski Clinic in Texas?

Thanks for your help and sorry for the length.

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hi Cindy,

I hate that you have to be here- but welcome. this is the best place to be...

I am not a medical professional, but here is what I can offer from our personal experience

1) is this reaction to chemo normal?

Yes. SOme people experience a wide range of side effects while others get little to none. My father got it all, nausea and dehydration were the worst and it seemed nothing would help at first- we tried every med there was until he found combinations that helped. Also, blood transfusions helped when his blood counts became too low. Severe dehydration can cause a myriad of problems- for my dad he became weak, incoherent, his potassium levels dropped and he had to be hospitalized for 8 days because his body was shutting down- all from dehydration! (from chemo)

2) is it normal to labeled extensive SCLC when the cancer is in only one lung?

From my research it is only labeled extensive if the cancer has spread beyond the lung to other parts of the body - even lymphs.

3) they are saying that they can't do radiation because it has been declared extensive...is this normal?

I have been told that radiation would only be done as a pallative treatment to relieve pain from a metastasis such as a bone met. It is sometimes used to remove metastatic tumors from the brain, and also as a preventative measure known as PCI intending to prevent cancer from invading the brain...

4) she was scheduled for her 2nd round of chemo on 9/13; but, of course, they have held off? What is the normal after having this type of reaction?

They will most likely wait until your moms body is strong enough to handle treatment- maybe boost her blood counts by blood transfusions, get nausea and dehydration under control and perhaps recommend appetite enhancing prescriptions.

***These are all answers based on my personal experience- there will be others with more to add. of course i am not a doctor and it might be best to write down all your questions and present them to your moms doctor. Knowledge is key and having (bein) a great advocate for the medical care your mom deserves can make a big difference in her cancer journey and survival.

Please keep us posted.

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My wife had Nsclc Not Sclc But If I can help Pm me. Here quite a bit

Click on Link For some helpful Info on avoiding and dealing with side effects of Chemo. This i great info.

http://www.cancersupportivecare.com/chemotherapy.html

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Cindy,

My Husband Alan has SCLC and had all kinds of issues

with chemo. He also had Pneumonia, blood Clots, blood infections and a Brain met.

The good news, he is living a wonderful and full life

you will read his profile and see everything he went

through and how well he is doing today. I am very

sorry you and your family are going through this. I

will keep you and your mom in prayer. We are here for

you.

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Cindy,

Sorry you have to be here. My girlfriend had SCLC and hers was determined to be extensive because the pleural effusion had malignant cells. Other than that she started out with a 8 cm tumor in one lung. She also had a horrible time with dehydration and constipation (among other things). She was on a once every 4 week schedule with the three day in a row doublet chemo. I think she couldn't tolerate it any earlier than every four weeks. We kept telling her to really pump the fluids in, but her nausea was beyond real. Nothing ever really helped control that and she did end up in the hospital at least once for dehydration. The flu-like symptoms came and went after about a week for her.

Best of luck with treatment and try and stay ahead of the symptoms.

Regards,

Welthy

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Welcome Cindy,

Keep up the great work.

I know you have been approved for a second opinion and I just want to second that. Or even third!

Most important is correct staging so that proper treatment is delivered. Sounds like you are questioning and sounds like there is reason.

Never heard of that clinic in TX. Why do you ask about it?

WE are here for you and your Mom.

Cindi o'h

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"Cindy"] they changed the diagnosis to extensive SCLC because she had the large tumor (size of lemon) and several smaller areas still within the right lung. Note: the fluid did not show any cancer.

It's possible Cindy they are classifying it as extensive because they can't hit the tumor and those "several other spots" with one radiation "beam". I don't know how wide a path radiation can go, but you may want to ask the oncologist.

What kind of chemo is she having? My Dad has started a new regime of Cisplatin and Camptosar and it's kicking his arse. Over the weekend he became so dehydrated we thought he would be hospitalized. Some fluid at the oncs office fixed him right up though. I would agree a second opinion would be a good idea when she's feeling a bit better. Are they giving her anti-nausea drugs with her chemo? Also, there is procrit and other drugs that can be infused to help with the low blood counts. Hang in there, I know it's tough!

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Hi everyone. I want to thank you for the many positive messages that I have received and for those you have posted for others.

My mother had the ultimate healing on Monday, 9/25 as she went to be with the Lord in heaven. She was an amazing woman and I am so greatful that we have had this last 30 days to be so close to each other. She was known as a woman with an amazing smile, sincere heart and her gracious spirit.

May God's grace be with each and everyone of you as you continue your battle for life...

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