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Question about stage 3 or 4 quality of daily lives

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

I haven't been on this board very long, but reading many posts from people with stage 4 nsclc I see that many are actually leading fairly normal lives. The reason I'm posting this question is because my husband was just diagnosed with stage 3 lung cancer yet he lives in bed most all the time and can barely walk two feet. I don't understand the difference here. Can anyone help me understand why this can be?

ARobben's picture
ARobben
Posts: 46
Joined: Apr 2009

Has he begun chemotherapy yet? Chemo can affect different people differently and at different times.

Another thing that comes to mind for me, because of my personal experience, is Pulmonary Embolisms (blood clots in the lungs). When I was diagnosed with Cancer (Stage 4 NSCLC), I was diagnosed with Pulmonary Embolisms a few days later. The doctors informed me that lung cancer did not typically present with the sort of extreme shortness of breath and fatigue that I was experiencing. I was put on blood thinner for six months which helped to clear up the clots. This is something I may ask your doctor about. They have to do a special CT scan with contrast to detect the Embolisms. They can be easily overlooked if you're not specifically looking for them.

Just a thought. Hope this helps!

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

Thank you so much for mentioning this to me. I will be seeing the oncologist on July 7th and I will be sure to ask him about this. The odd thing about my husbands cancer is that even though he is a senior, his health was great and he was working out at the gym 3-4 days a week. The only indication we had before his diagnosis was a occasional cough that did not seem to go away. Once I took him to the doctor it's been one nightmare after another and this all started a couple months ago. I sincerely appreciate your adivce ARobben and I wish you all the best in your recovery!

Jager's picture
Jager
Posts: 32
Joined: Jun 2009

Where in the lung is the tumor located?

My shortness of breath was caused because the tumor is blocking one of my lung lobes.

Is he under kemo? That also affects you for a few days after every kemo.

Another reason could be that his inmune system is compromised fighting.

You need to ask for a complete blood test and with it his doctor can check his red/white cell account, if there is any infection or any other problem that can be treated.

I tell you this because my doctor ask me for one of this blood examinations every time I go to see her and she can even tell if I am smoking or not (even if I try to cheat), she can detect everything and prescribe me some medication to boost me up again.

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

Jager...we don't know exactly where the tumor is located yet. We won't see the onc till July 20th. All I do know for sure is that it's outside of the lung because be had what they call malignant plueral effusion. He is taking chemo of Gemzar/Carbo. We've just begun this journey and he has only had about four treatments. And yes it totally zaps his blood counts. In fact, we are going for 3 units of blood again tomorrow and he is on Prednisone again.

Jager's picture
Jager
Posts: 32
Joined: Jun 2009

I obviously don´t know if you have insurance as this medication is very expensive, $2500.00 USD a shot here in Mexico but it is really good to help his inmune system to hold on kemo attacks, the name is Neulastim, it is made by Roche.

As I said to ARobben in another post, recently they changed this medication for another one named Bioclin or Biocilin (I promise I will give you the name as soon as I return home), it seems to be cheaper but for me it was a really good change from Neulastim, my oncologist prescribed me one shot for 7 days after kemo and I did great, still some tired for a few days but nothing compared to past experiences, I was able to assist my wife at hospital, to be there when my new baby came to this world and to deal with doctors, medications, to carry them home and assist them the first days when wife was not able to move.

I am mentioning this because I have a blood test a week after kemo and two days before next one, all leucocites (don´t know if it is written right) and the important things the oncologist check are always above the normal-maximum level (which seems to be good) as first I started kemo with Alimta/Cisplatin, then, after a treatment she gave me (with medications I told you above), she added Avastin to the misture and I am doing fine.

I am taking my kemo every 4 weeks and something I have noticed is that after 3rd week I started to feel a little tired until next kemo. Doctor said that I am supposed to take my kemos every 3 weeks but that means to loose more than half my income and I can´t afford that as I am paying my home, my car, my retirement founds and a lot of things you get for your family. Many people would say money or possesions are not worth it and I already considered that but my feeling is: If I am going to die, I don´t want to leave my family in poberty, so I choosed to keep working as I am strong as usual and to get my kemos every 4 weeks. I can stand a week or a few days of the week feeling a little tired

I receive Prednisone only for 3 days, one the night before kemo, then two days after kemo and that´s all.

Cheers

Mario

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

Thank you Jager....I will certainly check into these medications. I appreciate your help with this issue. My husband also takes prednisone but 21 out of 30 days a week.

Good luck to you and I will keep you and your family in my prayers! Keep in touch and let me know how you're doing?

Michelle

Jager's picture
Jager
Posts: 32
Joined: Jun 2009

it Seems neulastim is not available in the USA but I found a website in english that explain everything very clear so you can check the main ingredient of the formula and ask your doctor for a medication available in the US with same ingredient.

check this link please, very clear and illustrative.

http://www.medsafe.govt.nz/Consumers/cmi/n/neulastim.htm

Cheers

Mario

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

Here, its Neulasta - similar name; its a shot that helps rebuild the blood cells that chemo and radiation deplete. Very expensive. I was lucky enough to be in a clinical trial and the trial drug company paid for everything. I think there are programs to assist with payment, though.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Neulasta is a white blood cell count builder, as far as I know, and a subset, if you will, of Neupogen. Neulasta is a short-term fix while Neupogen is expected to last much longer.

I was injected with Neupogen rather than Neulasta when my WBC count was too low to do chemo as they wanted a more 'enduring' positive effect. As I recall, the Neulasta shot is good for a day or two, while the Neupogen shot is good for a couple of weeks, although the side effects are also purportedly more acute (I had no problems).

I am not sure this helps.

By the way, and I am only going to say this once and hope that it does not seem untoward: the woman in that photo, stayingcalm, is truly a beautiful woman.

Take care,

Joe

Jager's picture
Jager
Posts: 32
Joined: Jun 2009

Hi Soccerfreaks, good afternoon.

I know for sure Neulastim is good for a week according to my doctor, that´s the reason for her to prescribe 7 (1 every day) shots of the other medication when neulastim was not available at the hospital.

Now, a week is the lapse of time when kemo chemicals are in your blood torrent (at least, the time when it is more concentrated) so it helps, I know it is expensive but as I stated in my first post, I don´t know if they have insurance or free medications as I am Mexican and don´t know the american Health system.

Now, something that I am thinking about, the fatigue that people feel is because the medication is in their blood torrent and killing good and bad cells. Now, with my first kemo I had this tireness just for 3 or 4 days (with Neulastim shot included), after that, I felt as strong as healthy like before the disease so recovering or keeping your white blood cells count in the high levels is usefull to keep the fatigue away?

Some other major point to consider here is the psicological side of the disease Michelle. When diagnosed I was so affected that first week I spend it laying in the couch in my living room, felt really tired, wasted as some may say. I analized the situation and after a month, I did find some curious stuffs, when at home thinking only in my disease, I felt tired and wanting to do nothing else than been at home but when the time came to go back to work, I felt really fine as to go offshore for 14 days and I spent this time working, busy and not thinking about cancer so I think my mind was playing tricks, you know, at home everybody was aware of the illness, everybody was paying attention to me, I assumed the victims role and my body started to react that way.

Talk to his doctor, if there is not a medical explanation for this problem, it may be good to try to get him out of bed for short periods of time and to try to do other things together (no need to be physical demanding) as playing a board game, sitting in the front yard, go out in the car to nowhere, you know, just to get him out of your home to see other people, new constructions, nature, going to a far starbucks to get a coffe and a piece of cake, etc. that can distract his mind from mind traps.

Just my 2 cents.

Cheers

Mario

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

Thank you Jager...I will talk to the docs about this medication as soon as I can. If it's expensive no doubt the insurance company will deny it to us though. They seem to be denying everything lately including nausea and sleep meds. The doctor had ordered nursing, physical therapy and a home health aide to help. They each were allowed three visits and put in a new request for additional. That was over a month ago and we're still waiting. It's so sad to know that my husband dedicated 42 years of his life to NASA and this is the insurance they give him? Medicare won't pay anything unless he agrees to hospice which he won't because he's still in total denial. I tried talking to him about the prognosis and he cut me off immediately saying he didn't want to discuss it....so we won't.

Jager's picture
Jager
Posts: 32
Joined: Jun 2009

Michelle,

The other medication I receive is named Biocilin, as usual (it seems) it is not available with that name in the US, the component is "Filgrastim". I found it in the USA as Neupogen (filgratim) in the web, don´t know if that is the laboratory or comercial name.

It seems to be cheaper with great effects compared to Neulastim, but I don´t know for sure.

Cheers

Mario

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

Thanks, Joe, that's a sweet thing to say! Me about a year ago and a happy accident of computer-screen backlighting is all.

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

Joe, is there a shot for red blood cells too? All of his counts were at a dangerous level last Tuesday. He just had 3 units of blood on Thursday...plus prednisone at home.

wicker_woman's picture
wicker_woman
Posts: 19
Joined: Aug 2004

Michelle,

I'm a Stage III-B NSCL - Large Cell suvivor. During my treatment my red blood cells count was always low and I would get a shot of Procrit just about every time I completed chemo. After my surgrey I had to have a trasfusion also.

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

When he went for blood tests last week they did give him a shot, maybe it was Procrit.....I'll ask. Following that shot we did have to go for another 3 units of blood. Seems like we have to do that following all chemo's.

Wicker....I added you as a friend here. I really was inspired reading about your journey and it gives me hope for my husband. Thanks!

wicker_woman's picture
wicker_woman
Posts: 19
Joined: Aug 2004

Michelle,

I'm happy that I can share my journey with you and others on this site. As I said when I was diagnosed almost 8 years ago I was looking for hope and really did not find much. I owe my life to those that took a chance on me at Vanderbilt. If you have any questions, please e-mail me here on the site and I will try and help.

Marilynn

looch969
Posts: 27
Joined: Jun 2009

Marilynn,

What treatment did you receive? Was it a clinical trial? I have stage IV Non Small Cell Lung Cancer both lungs with mets in right rib, shoulder & lower back.

Tomorrow will be my second round of chemo. I receive Carboplatin, Alimtra & Avastin. Any information you can give me will be greatly appreciated.

Thanks,

Tamie

wicker_woman's picture
wicker_woman
Posts: 19
Joined: Aug 2004

Tamie,

I was given 8 rounds of Carboplatin and Taxol along with 34 rounds of radiation. It was not a clinical trial. I recieved chemo and rads in Atlanta and when the cancer returned I went to Vanderbilt looking for a clinical trial since I was told I was inoperable. At Vanderbilt they made their own diagnosis where they were able to resect the uppper and middle lobe of my right lung. I was very lucky to have my lung resected and have not had any major issues since. I do however have issues from radiation which we currently have under control.

My best to you in your journey to survival,
Marilynn

Jager's picture
Jager
Posts: 32
Joined: Jun 2009

in the end it turned to be that the "other" medication I have been talking about is the same you are talking about in this post, it´s just that it has a different name in the USA.

Yes, this one has been better for me and it seems to be cheaper than Neulastim.

What puzzled me is that you said that you receive only one shot for 21 days? I am receiving one shot every 24 hours for seven days after kemo day.

It worked great for me and will ask for this one tomorrow instead of neulastim.

Tomorrow is going to be my 4 kemo session, waiting for it as I am not feeling at 100% today. It may be that my kemo must be every 3 weeks and I am taking it every four so last 2 or 3 days I start to feel tired and achy but tomorrow will return to normal as it had happened before.

See you later mate.

Mario

Jager's picture
Jager
Posts: 32
Joined: Jun 2009

Sorry, posted twice same comments, lol.

Mario

MarykayUSMC's picture
MarykayUSMC
Posts: 9
Joined: Jul 2009

Hi I am new to this site - I have stageVI lung cancer that has moved into my liver. Only 49 and just found out May, 2009. I am getting chemo every three weeks. There is no cure for mine but chemo may shrink it to prolong life.
Neulastim is available in the USA - I get a shot the day after every chemo. I don't have any systoms of the lung cancer or the chemo, so far. I do have side effects from the neulastim shot. I get body aches. My feet, knees and hips hurt most of the time. On the good side, my blood work is good every time--- so far my white cells are good.

cobra1122's picture
cobra1122
Posts: 245
Joined: Jul 2009

The effects of treatment hit everyone a little different, and then there is the depression.I am 49yrs old I suffer from Small cell and Non-small cell lung cancer and I am now terminal. I also have Altzheimers and Parkinsons, I have 45% of my heart working and I have suffered multiple strokes. But I look toward the positive in everything as in things could be worse and quitting is not an option. I am on Hospice, and suprise my medical staff on how positive I am. But I am an (X)Marine and don't know how to quit, I adapt, improvise, and overcome. The answer is positive attitude by me and my wife, we surround ourselves with positive and let go of the negative, even during chemo I kept on Volunteering at the hospital my wife works at, she is a occupational therapist. We have ups and downs thats normal, but we dust off and keep going. I was granted last month alittle more time by the Cardiaologist, whats left of my heart was in deep trouble , but he bought more time to spend with my family, grandchildren (5) and friends.
Just try to keep a positive attitude and help him see this.

Our Prayers are with you and your Family

Dan & Margi Harmon

clsmith
Posts: 83
Joined: Nov 2008

You are truely an inspiration to me and everyone. You have been through so much and with such a great attitude. I have lung cancer stage 2. I was diagnosed sept 08 and had surgery and chemo. I am doing very well.

Tske care, and my thoughts are with you and your family. Come to the chat room sometime.

Cindy

cobra1122's picture
cobra1122
Posts: 245
Joined: Jul 2009

That is very kinda of you to say Cindy, but my main goal is to get people to realize that this is not the end. Life dealt us a bad hand but we can keep going and make the very best we can if it. It sound as tho you are going in the right direction, just keep up the positive. Yea we are human and get down once in a while, but we have to pick ourselves up and dust off and keep going, the alternative is not aceptable. So, you go girl and our prayers are with you and your family as well as with everyone. I'm a (X) Marine and we never give up we adapt, improvise, and overcome...

MarykayUSMC's picture
MarykayUSMC
Posts: 9
Joined: Jul 2009

I too am a "former" Marine - not (X) -once a Marine always a Marine.

Sorry to hear the negative- glad to hear you have a positive additude. Never retreat, just regroup. I have stageVI lung that has moved to my liver. Trying to stay strong and be the "one in a million" that may beat it. My husband and I met in the Marine Corps. Both my son's are Marines now and are home on humanitarian leave. Didn't want to get cancer of course, but it's keeping my boys from deploying right now.

I want to add you to my friend list - battle this together.

cobra1122's picture
cobra1122
Posts: 245
Joined: Jul 2009

Just keep up the fight regroup and attack, never let it get the best of you. With a positive attitude and your family behind you, you maybe that "one in a million". Your in our thought and always here for another Marine....

I added you to my friends list

SEMPER FI MARINE

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