Topic: Neulasta concerns Please Help!

I am supposed to get a shot of Neulasta on Tuesday. I have only heard/read horror stories about it. Excruciating bone pain for days not rellieved with even morphine. One woman had her spleen rupture. Only one previous mention here. Has anyone had any experience with Neulasta or Neupogen? Please someone help, I am really afraid and unsure what to do.
Thanks and God Bless,
Jamie

Re: Neulasta concerns Please Help!

Jamie.....  I believe, it was Suzanne who had mentioned that Neupegen was easier on her system then Neulasta was.  Until others have a chance to respond to you it might be helpful to read up on some prior discussions in regards to either, Neupegen or Neulasta.  The "google" search on the top right hand side of the page will lead you to some of the threads.
Others have had some good results with it.
Good luck,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

3 (edited by marions Sat, 20 Jun 2009 10:07:26)

Re: Neulasta concerns Please Help!

Jamie....a link http://www.neulasta.com/patient/howcanh … anhelp.jsp

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Neulasta concerns Please Help!

Jamie,

I have had Neulasta numerous times after chemo treatments. I always had them inject into the belly rather than the arm. Also, they would inject slowly to minimize the side effects/pain of the injection itself. One of the nurses suggested taking Claritin or other over-the-counter antihistamine for a few days after the injection to help minimize the backaches, and that worked pretty good too. I was on Gemzar and Cisplatin. I would have both on day 1, only 1 on day 8, and the Neulasta would be given on day 9 of a 21-day cycle. The reason for the Neulasta was to keep the hemoglobin from dropping too much. My strong preference was to have the Neulasta and its side-effects rather than risk the hemoglobin decline that would be treated by a blood transfusion and hospitalization to get enough blood.


Hope this helps!
Louise smile

Re: Neulasta concerns Please Help!

Hi Louise;
Thanks for your response. I am wondering if we're talking about the same medication. I just double checked the website for Neulasta and it says it works on white cells not hemoglobin. It sounds like the same thing from where they inject though. The pain I think I could tolerate but when they talk about spleen rupture and fatalities I start to get a little panicked. Thank you so much for your response. I really appreciate it.
God Bless,
Jamie

Re: Neulasta concerns Please Help!

Hi Jamie,

I've had Neupogen many times. I had to inject myself daily.  My doctor told me to take it until I get the bone pain signal -- which could feel like a lower back -- like you've tweaked pain or a pain in your breast bone. the pain didn't last. If you had to keep injecting, then I would suppose you would continue to get the pain.

G

Re: Neulasta concerns Please Help!

Hi, Jamie,

My husband has been a meteorologist in the military, and we all know meteorologists who always predict the worst. Is many ways, the oncologists have to tell us about the potential side effects, but they have no more assurance of how it will affect you than the meteorologist does. What I would ask myself is this: What is the worst that could happen with it; and what is the worst that would happen without it. Then the question is, am I strong enough, with God's help, to face today's battle? Which risk am I willing to take in fighting today's battle? One step, one minute, one shot, one day at a time. Whatever you decide, you will make the right choice for you.
Keep us posted!
Louise smile

Re: Neulasta concerns Please Help!

Hi All;
Thanks for your responses. I cant tell you how much I appreciate your posts. I was able to get my Gemcitabine today. WBC was up to normal. Only by a tenth but still I think its the first time in over a year. I am scheduled to get the Neulasta tomorrow afternoon at my local clinic. I wasnt able to talk to my onc but talked to the chemo nurses at Mayo and she reassured me that she had never seen the spleen side effect. Bone pain and rash but not life threatening. I am still nervous and wish I could get the Neupogen instead, but hopefully this will be Ok and really jumpstart my bone marrow.
Plan is Dr appt in 2 weeks, lab tests and start another 3 week cycle of Gemcitabine followed by injections of Neupogen on the 2-4th days after chemo. Thanks again and please keep me in your prayers. I'll let you know how it goes.
God Bless all of you,
Jamie

Re: Neulasta concerns Please Help!

Teddy lights a candle at Mass every morning for our CC Family and also good luck tomorrow. Sometimes the fear outweighs the treatment and you will be just fine!!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Neulasta concerns Please Help!

Good luck, tomorrow, Jamie.  I will be thinking of you and am awaiting your good report.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Neulasta concerns Please Help!

Jamie,

Good luck with your Neulasta tomorrow. I hope everything goes uneventfully.

G

Re: Neulasta concerns Please Help!

Jamie,  Way to raise it naturally!

"Eat a lot of fruits and vegetables ( if your white blood cell counts are lower than 1 k/ul , check with your doctor who may recommend avoiding raw foods). Get plenty of rest. Some extra vitamin C, zinc, and beta-carotene may be helpful, but don't overdo it with the supplements, as this may be dangerous"

If you have a low red blood count eat beets...it really works to raise they level.

I hate the idea of my  husband getting shots to correct the blood  counts so I would use these methods and they always worked. 

LuLuu

I miss you more and more everyday. 
RFL 6/28/58-12/27/08

Re: Neulasta concerns Please Help!

Well, I got the shot yesterday. No problems so far other than a little pain at the injection site. I've talked to a couple of other people and they say the bone pain shows up after a couple of days. I'll keep you posted. I'm glad next time I'll get the Neupogen. It sounds like much milder side effects. Thanks again for all your support and information. It has really helped.
God Bless,
Jamie

Re: Neulasta concerns Please Help!

Well here's my update. No real problem with the Neulasta, some pain, but nothing I couldnt tolerate. Raised my WBC to 8.8 the following week, down to 5.5 the next week when I went for chemo. Went to my local clinic for Neupogen injections Tues-Fri last week. Had a problem with my arm and nurse had me see a DR on Fri, ended up with ultrasound to rule out blood clots and now on antibiotic for cellulitis. Did WBC it was at 4.3. Today went back to Mayo was able to get 2nd dose of Gemzar, WBC was 3.6. So at least it is working enough that I could get the chemo but not keeping it up as well as I would have thought. Now I checked with the pharmacy to see if insurance will cover it if I self inject from now on. They will cover a part of it but I just found out for 2 weeks my copay will be $461!!
I told my husband I feel like giving up. Good grief. Now I am worried how much I will have to pay for last weeks injections at the clinic and I am set up to get the rest of this week at the clinic. There is always something it seems. It's not like we don't have enough to worry about/fight with this darn cancer, but then we have battles with insurance, poor nursing care like Kris got, increasing costs for the insurance and copays, or cost of Cobra being so high after someone has to stop working. Ok Lord, we, those of us fighting this rare cancer that plays dirty and fights unfairly need a break!! Sorry felt the need for a little venting session too. Hope everyone is having a better day than me today smile.  Tomorrow will be better.
God Bless,
Jamie

Re: Neulasta concerns Please Help!

Jamie you just vent away with Kris. We have broad shoulders here. Wish things would run easier for everyone. You are so right there is enough to deal with as it is. Guess we are all a lot stronger than we think we are, yes? Not sure many could handle what this Board does. SO KUDOS to us at CC.ORG!!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Neulasta concerns Please Help!

I feel your pain, Jaimie!  It's either a slap in the face or a kick in the butt.  The whole financial thing adds insult to injury.  I get sooo annoyed at the Susan B. Komen Foundation and other foundations specifically for breast cancer, because it is as though other cancers don't exist for them.  Yet we have the same problems, if not more, than people fighting breast cancer.  Hell, we have to be on chemo the rest of our lives!  I'd be HAPPY to lose a breast or two if it meant that my cancer would be gone.  But we have to lose a LIVER  to get rid of our cancer.  Which of course means DEATH if a transplant is not available.

Vent over.

Re: Neulasta concerns Please Help!

Neulasta: I had my first injection of Neulasta last week, one day after chemo (Avastin + gemcitabine + cisplatin). My choice was either accept the Neulasta injection, or skip chemo for 2 weeks. I wanted to stay on schedule, so I took the Neulasta.

I had a low-grade fever and mild body aches for 2 days following the injection. Not bad at all, just took it easy for a couple of days. White count rebounded into the normal range and stayed there. (My platelets were not as cooperative...)

I would say to anyone who could benefit from it, to give it a try at least once to see how you tolerate it. I think that if it allows you to stay on your chemo regimen and keep fighting, it is worth it as long as the side-effects are tolerable.

Violarob in Texas

Re: Neulasta concerns Please Help!

Insurance approval for the treatment of CC has been a problem all along.  I don

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Neulasta concerns Please Help!

Marion;
I think it sounds like a great idea. I have not had a problem so far with the insurance actually denying anything, it is just what they charge me, my deductible keeps going way up each year and my monthly premium is getting way too high. Since we are on an individual policy and I can't get insurance from anyone else now, we are at their mercy. I never know however if something will be approved or not. I think if we could get the board to start a thread for your idea, with appropriate subgroups, ie, chemodrugs/medicines, radiology options/ surgical procedures, etc it would make it easier to both fill in and then collect data. Even before it gets put together someone could check the area they are having problems with denial and at least get some info to back their claims. My thoughts would be that we should include type of insurance you have, treatment received, and maybe where you have gotten treatment. I think that maybe some insurances are less likely to deny if they know a hospital uses the treatment regularly and if the Docs are willing to appeal for their patients. These are just some thoughts off the top of my head. I would be happy to help as much as I can. God Bless,
Jamie

Re: Neulasta concerns Please Help!

Jamie... great response, and thanks for the offer to help.  Basically, Sara, Rick, and Stacie have set up this site to include the information mentioned.  Let's await all other comments and we will go from there.
On another note.....I am hoping for the new health care system to address the issues mentioned by you Jamie....deductables out of reach for the insured and a major reason for bankrupcties in this country.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Neulasta concerns Please Help!

Jamie... great response, and thanks for the offer to help.  Basically, Sara, Rick, and Stacie have set up this site to include the information mentioned.  Let's await all other comments and we will go from there.
On another note.....I am hoping for the new health care system to address the issues mentioned by you Jamie....deductibles out of reach for the insured and a major reason for bankruptcies in this country.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Neulasta concerns Please Help!

Marion;
My great fear with the talk of the new government run health care is that those of us with rare cancers will not be able to get treatment. It wont be cost effective. I was given statistics that chemo didn't really work on cc, only 30% had any results and that was just keeping it from growing as fast. That was at Mayo. Obviously, some of us have had results and have seen shrinkage and have outlived predictions. If the bean counters feel that we are not worth the cost, we won't be able to get it.  As a nurse, i have seen how the administrators are often only interested in the bottom line, not quiality of care. If these are the type of people in change I am afraid. We do not have the numbers that other cancers do or the media involvement. We'll be the first ones cut I'm afraid. And we can forget any new experimental treatments. Just my little rant and fears for what may come. God Bless,
Jamie

Re: Neulasta concerns Please Help!

Jamie

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Neulasta concerns Please Help!

Jamie,
  My husband was uninsured when diagnosed and because he was given permanent disability status immediately was able to be covered by Ohio's Medicaid disability program. He is now on Medicare.  He has never been denied or had to fight for a single treatment. In fact his treatment was much different than most indiviuals on this board and probably would have been denied as not being proven effective by a private insurer.I feel he may not be alive tody if he had private insurance rather than Medicaid. I have personally had nothing but trouble dealing with claims from private insurance companies. The few times I have had medical issues have resulted in my having to file three complaints to my state insurance commission to get the companies to pay the bills they were responsible for. I think people are being fed a lot of propaganda as far as the ineffectiveness of gov't programs. My son has had Tricare through the Army and both sets of parents have had Medicare with absolutely no complaints or problems. Don't be afraid. I actually believe more money will be available because right now healthcare is being run as a for profit business and that is not right.   Mary

Re: Neulasta concerns Please Help!

I am on Anthem/Blue Cross/Blue shield.  My complaint is that COBRA is really expensive, but maybe it is just because I'm not used to paying my portion ofo the premium.  I have not been denied any treatments so far.  My yearly deductible is $2000.00.  My co-pays are $5/$10 for precriptions.

Therefore I am also very hesitant to get on to the government run health care bandwagon.  I too am afraid that care will have to be rationed.  I have CT scans every three months.  Pretty sure that won't happen under Obamacare. 

As Jamie said, it would be more cost effective and a more efficient use of scarse gov't resources to just let those of us with poor prognosises just die.  But we are not statistics.  Several of us have lived years with radiation/chemo treatments.  I'm going to be a 2 year survivor next month.  If I hadn't had those treatments, and hosptializations when I got infections, I wouldn't be here right now. 

My healthcare team - oncologists, gastroenterologists, and most especially nurses have provided excellent care these past 2 years, and my hat's off to them.