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Posted

I've been "lurking" for the last few weeks but have never posted, but I thought I'd introduce myself as all of your stories and support have already been a tremendous inspiration to me. I'm 23, from Michigan, and about a month ago my mom was admitted into the hospital with pneumonia. She was released a week later, but the pneumonia really wasn't clearing up so they did a bronchoscopy on her and found several spots in her upper right lobe that tested positive for squamous cell carcinoma. A meeting with a surgeon and a mediastinoscopy later we were told there would be no surgery for her, at least not right now, as the cancer had spread to the lymph nodes. So...back to the oncologist, who tells us she's staged at IIIA and suggested a combination of chemo (Cisplatin and VP-16) and radiation, which she begins today. Her oncologist is staying quite positive, especially since my mom is fairly young (she's 51) and quite strong. My mom is incredibly scared to start chemo. She told me last night that she can't stop feeling scared that they're going to be injecting poison into her body. I could only tell her to think of it as medicine, not as poison, and that there's really no reason to be scared when we don't even know yet how her body will react or what side effects may bother her, but she's terrified anyway.

I'm sorry this is so long, I just wanted to say hi and to let you all know how encouraging your posts are, and to let you know a little bit about us. Thanks for all the kind words, you give me and my family hope.

Posted

Welcome Sarah, I also had sqamous cell lc 3 a/b and was told I wouldn't be a candidate for surgery, after two chemo treatments had another mediastinascopy and the surgeon decided to operate so there is hope for surgery for your mother. I was treated at the U of M hospital in Ann Arbor.

It sure hasn't been a cake walk the last 11 1/2 months, but it is better the the alternative.

I hope you find this meassage board as helpful and hopeful as I and many others have, there are many mant great people here.

Praying for your mother and family.

Posted

I am so sorry to hear about your mom.

Chemo is so scarey, and there are a lot of misconceptions about what chemo is. Technically, any type of treatment of the body with a chemical is a chemotherapy. So taking tylenol is technically a chemotherapy. But that term has come to mean the specific treatment of the body with chemicals for cancer. Chemo is not necessarily poison, it is medicine, and it should give your mom hope. Chemo has done so much good for many people. It's not easy, but it shouldn't be painful either. Chemo has changed a lot in the past few years alone. Yes, there are side effects, but there have been vast innovations in the ways doctors can fight those.

Six years ago I lost an aunt , and seven years ago an uncle, to lung cancer. I saw them both going through the chemo experiencing a lot of pain and sickness. My aunt used to joke that she new so much about toilets she was going to become a plumber. Now, as my husband started Chemo on Friday, his doctor said there was no reason he should ever vomit, if he does, they will adjust his anti-nausea perscription. In fact, there was a new one that just got passed by the FDA last month that is suppose to be extremely effective. There are supplements and drugs your mom can take to combat the fatigue, the lowered immunity, and if there is any pain, there are pain meds. I also suggest anti-depressants. Take full advantage of what is out there, and do not be afraid to take what is offered. There is no reason that chemo should ruin your mom's life.

After Keith's first treatment, he was tired (but he was tired before the treatments started too), he was nauseous but did not vomit. He also said it wasn't constant nausea, just waves that came every now and again. He just couldn't do any jumping jacks or a lot of activity. Just keep your doctor informed of any side effects, and they will try and they will work to give her quality as well as quantity of life.

My prayers are with you,

Carleen

Posted

I'm glad you found this board. These people will rally around you and your mom and are more than happy to help you. Tell your mom that being her age (young 51) and being strong both work very favorably for her. They did for me. I was 48 when i had chemo and radiation, back last April thru June, and just found out Friday that I have a clear CAT scan and no cancer. That will help show mom that things can work out for her as well. Also, there are many anti-nausea meds that work (Zofran and Anzimet) and that the chemo really is medicinal in nature. the sooner you begin, the faster that tumor will disappear. praying for you. praying for us all. :)

Posted

Dear Sarah,

I am sorry you have the need to find and join us, but I also wish to welcome you to a wonderful group of new friends!

I have to share with you that I also was a Stage IIIA with two cancerous lymph nodes. I DID have surgery, 8 years ago. I had my left lung removed along with the two cancerous lymph nodes and several extra's to be on the safe side.

I also did chemo & radiation treatments after my surgery.

I would really suggest that your mom get a second opinion on having surgery though. And if need be even a third opinion. If it were me, I would try and find a surgeon that would agree to do surgery.

Good luck and stay with us. Your in a safe place here.

Warm and Gentle Hugs,

Posted

Welcome, Sarah, to our "little" family here. Please do share your thought, fears, feelings, questions, whatever. We are hee to support each other through this bumpy journey. Don

Guest JanetK
Posted

Dear Sarah

I am staged at 3B/IV depending on who you talk to, but anyway I wanted

to share with you my experience with chemo, so you can pass it along to

your Mom and maybe it will help.

I have been on chemo since last September and my disease is stable.

In fact I had a chemo treatment this morning and I'm posting this from

work. The only time I was ever sick was when I forgot to take a

"compazine" and that was the day after chemo and I had also just eaten

the biggest Mexican food plate you've ever seen. ( Someone not on chemo probably would have gotten sick)

The first few days after chemo I feel "hungover" but I'm able to work, play, and participate in and enjoy life.

At every infusion I always make sure that I'm relaxed and when they put

the chemo bag on the pole and hook it up to my IV, I say Thankyou and

close my eyes and welcome drugs that I believe in. I truly believe that

your attitude plays a big part in ones reaction the treatment.

Good Luck to you and your Mom

JanetK

Posted

Dear Sarah...I'm so sorry that you have to be here.I cant give you any advice on chemo because my dad has not had the oppotunity to start it yet, however just from belonging to this wonderful family I have learned so much. I know everybody is different and not everybody will react the same. There are many on this board that will tell you their experiences and you will feel hopeful after reading their survivor stories. I know you and your family are scared. It takes a while for the news to settle in, but once it does you will want to use your energy to fight. You and your family have a difficult battle ahead but remember she can beat this...Any questions or concerns you have let us know. We are all here for the same reason.. Remember we know how you feel....I am from Mi. also however, I'm not 23 though ( my children are 21 and 24.) Where about from Mi. are you.....Take Care Sarah........cathy

Posted

Sarah, my wife had chemo and radiation at the same time and it was very difficult for her to take in enough fluids to keep her hydrated. it might be well to ask the doctor if she might have an IV once a week to keep the liquid sufficient, as well as her drinking a lot of liquids. My wife also suffers from nausea after the chemo treatment. We have been able to combat this with medication and with feeding her something every two hours so her stomach is never completey emplty (it seems to work like seasickness -- keep the tummy with food minimizes the nausea). Don

Guest DaveG
Posted

Sarah:

As everyone has said before, welcome to this really great big family of people with lung cancer or have family members with lung cancer.

As you are probably aware of, by now, I have recently been restaged to Stage IV. I start chemo (carboplatin and taxol) on May 5. I have several appointments between now and then for scans, lab work, etc.

Chemo is going to be new for me, although I am an 18 month survivor, to this point. I was Stage I.

This is my expectations for chemo. When I was told that I systemic mets to my lymphatic system, last Friday, April 18, my wifes first reaction was that she wanted me here for our 50th Wedding Anniversary in 18 years. My oncologist, Dr. Joan Schiller, then asked if I wanted the same, which, of course, I do.

I am 59 years old. I am very active and play golf almost everyday. When I asked about my activities, during chemo, I was told simply to follow what my body tells me. I hope to be able to continue playing golf while I am undergoin chemo. I will have 6 cycles over a 18 week period.

I have no idea how I will react to the chemo, but I can tell you this, I am going to beat this and get this under control.

When the 18 weeks are up, I will most likely get a 2 month rest then start all over with chemo again. This will continue as long as is necesary, until it is under control.

When I was told that I was restaged, I knew right away that there was no option other than to pursue chemo. We just had a new grandchild last Thursday and have another on the way from our daughter in September. I want to live long enough to see these two grandchildren graduate from high school and college. I have two older grandchildren, 2 and 4, and it is the same for them.

Lung Cancer is an uphill, downhill, experience. Sometimes it is hard to get oneself up, emotionally, but when that happens to me, I log on to this message board. It does not take long to get my spirits back up. This group of people have become family. We love each other, we understand each other, we support each other, we give for each other, we cry for each other, we laugh together, and we inspire those who need inspiration.

Up until this past week, I was the one who was always up. I was the one who always lifted the others. Suddenly I found myself at the opposite end of the spectrum and was very much in need of the support I had be offering all the others. Everyone on this board rallied around me and I can never forget all the outpouring of love and support. This will be the same for you and your mother. It is the same for anyone who comes here. We all share the same thing, a very devastating disease, but we also share a great deal of love for each other.

Please, pull up a chair, reach out and you will feel someone holding your hand.

Posted

Someone on this board coined the phrase "Better Living Through Chemicals". I thought that was the neatest and most appropriate phrase written. So, I say, go with all you can get. Anti-depressants will definitely help with the roller coaster emotions you will experience.

I have had so many chemo treatments I have lost count. I had very few side effects except sore muscles for a few days after treatment and, of course, the no "hair" thing. Never got sick as they gave me anti-nausea pills.

If you have questions or doubts - - - just post them here. Someone has been through what you are about to go through.

Good Luck and God Bless

Posted

Wow! I feel almost overwhelmed! There's so much to reply to, so i'll try my best...

First of all, thanks to all of you, you're so encouraging. My mother was doing fairly well when I got home yesterday evening. She was experiencing a bit of nausea, despite the anti-nausea drugs they had given her before the Cisplatin, so I mentioned what Carleen stated, that if it became severe they may be able to adjust her perscription so that it's a bit more effective. She was not expecting to be quite as fatigued as she was, so I reminded her that fighting cancer is hard work, and there's nothing wrong with feeling a bit tired!

She said they gave her two bags of fluid, one before the Cisplatin and one after, to make sure her fluids were up, and the nurses and my dad both were encouraging her to drink water throughout the treatment, so they seem to have that under control. She's also been perscribed an anti-depressant, which we're quite pleased about since her mood swings the last few weeks have been quite sporatic and unpleasant! We're trying to stay patient with her though. One thing that concerns me is that her blood count is already low from battling the pneumonia, which they said they usually don't worry about until you're a few weeks into treatment. They're going to start giving her Procrit to counteract that. Perhaps this, along with the chemo and stress of course, is what's making her feel so fatigued?

Both my mother and father were quite pleased to hear all of your stories of success and the encouraging words you all had, it really brightened our day. I wanted to share something encouraging with you all as well. My father ran into a friend yesterday. He had been battling cancer (not Lung, though. I believe his was Hodgkin's disease) for quite some time. He was in remission for a while but had a recurrance and was staged as a IV. He told my father it had spread everywhere and was just about as bad as it could get, the cancer was literally consuming his body. He kept hope and was persistant with treatments and today is cancer free. If that can't give you hope, I don't know what can.

God bless you all, I'll be thinking and praying about all of you.

Sarah

Posted

Sarah,

Your reaching out to give us hope and solice in the midst of your own troubles really personifies what this Message Board is about. The giving and receiving of love, hope, and support helps sustain us through our traumas and triumphs.

Praying for you and your family.

Posted

Yes Sarah my dad is back to radiation and chemo, actually he graduates again tomorrow....hopefully for a bit but hey if it is helping I wish they would just do it all the way thru.

The dehdration this is huge. AND just to be forewarned so if it does happen you are not freaked, she may need to take a trip to the hospital (the whole fever thing) my dad has been in 2 x in his so far 4 treatments. Once for fever he got a case of pneomonia and the 2nd time he had some sort of virus and one of his meds was making his blood pressure to drop too much. Just think she will be better there fueling up on the IV's!!! I was never worried when he went in cause i knew he would be much much better once he was sent home.

Again sorry ANY of us have to be here BUT i am glad i have all these wonderful people to help me thru it. :D

Posted

Yes Sarah my dad is back to radiation and chemo, actually he graduates again tomorrow....hopefully for a bit but hey if it is helping I wish they would just do it all the way thru.

The dehdration this is huge. AND just to be forewarned so if it does happen you are not freaked, she may need to take a trip to the hospital (the whole fever thing) my dad has been in 2 x in his so far 4 treatments. Once for fever he got a case of pneomonia and the 2nd time he had some sort of virus and one of his meds was making his blood pressure to drop too much. Just think she will be better there fueling up on the IV's!!! I was never worried when he went in cause i knew he would be much much better once he was sent home.

Again sorry ANY of us have to be here BUT i am glad i have all these wonderful people to help me thru it. :D

Posted

Sarah

You are doing wonderful! Keep up the good work and keep coming back to this board. Someone here will have an answer for you.

I did forget to tell you that mom would be tired. I was tired throughout chemo and radiation. So, you will notice her napping a bit more than usual. I never lost my appetite so I hope she can maintain as well.

Good Luck and God Bless

Posted

Sarah:

Glad you posted a message. YOu are going to be great support for your mother. Briefly, I was 51 when I was diagnosed with stage 3a adenocarcinoma (oct 2002). I had a large tumor (10 cm) in my right lung and the option of surgery was not possible at that point. My oncologist said he could shrink the tumor so I could have surgery and he did it with CISPLATIN! I had to be careful of becoming dehydrated during the 12 week treatment because I was nauseated much of the time, even with meds. Everyone is diferent and others I know of did not have this problem at all. What I did during this time was go into myt Dr's office for extra fluids every day or so. Fatigue is just a way of life with cancer. Excuse for many naps. Anyway, the Cisplatin sharank the tumor dramatically, so I could have surgery in February. It was not painful, I felt great after a few weeks; the upper lobe of my right lung was removed. The pathology reports after the surgery were all negative and there was never any lymph node involvement. I did decide to follow my oncologist's suggestion and am now having preventative chemothrapy and radiation to my mediastinum. Basically what I want to say to you is "THere is hope, always" There is so much this chemotherapy can do for us that no one could do several years ago. I am thankful that Cisplatin was there for me. I consider it now my friend on this trip through cancer land.

God Bless you and your mother.

Joanne

Diagnosed 10-02 adenocarcinoma Stage IIIa, inoperable

No lymph node involvement

12 weeks Cisplatin and Gymspar

Surgery 2-03; negative pathology report - clear

12

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