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EPOCH R/neulasta misery still going on

nhldaughter
Posts: 69
Joined: Nov 2010

My mom has been miserable for 2.5 days now. Nights are tough. I know neulasta causes bone pain, but she also has major abdominal discomfort. Side effects The neulasta and oxycodone 5mg cause abdominal pains too, but she has been miserable. We emailed the doc and he said take pain med every 6 hrs instead if 12. We have no support. We have so many questions and no answers. What if the PET activity of her stomach lymphnodes are acting up? Getting worse? Does  she have enlarged spleen due to neulasta? we don't want to keep bugging the doc office. We feel helpless. We all have had breakdowns and I just don't know if we are doing the right thing. This is only the first cycle.  Should we take her to city of hope here in CA instead of UCLA here? I'm sorry for having this breakdown online like this. I just don't know what to do, my dad and my sisters are a mess seeing her like this. In a matter of 5 days she has gone more and more downhill. The 5 day infusion was okay, but now...

Rocquie's picture
Rocquie
Posts: 510
Joined: Mar 2013

I am so, so sorry to hear your Mom is having so much pain. Call the doctor. Don't worry about "bugging" them. That is their job. Tell the doctor, insist, that something be done to control your Mother's pain. No one should have to suffer, this day and age, with the pain your describe. Even if she has to go into the hospital, her pain needs to be brought under control.

I also want to tell you that my first chemo was, far and above, the very worst I had. I did have to go to the hospital. I hope you won't think about her next chemo till she gets through the one she just had.

Also, try not to guess what is causing the pain. Just work to get it under control.

I don't know about your beliefs, but praying helps too. Also, try to have a peaceful and tranquil environment for her. No offense, but it sounds like the tension and angst surrounding her are making things worse. Have your breakdowns elsewhere. Soothing music, soft blankets, nice scents, back rubs, encouraging words,and cups of tea help. Crying, wailing, and wringing of hands don't. Remember who the patient is.

My prayers for your Mother,

Rocquie

 

 

Rocquie's picture
Rocquie
Posts: 510
Joined: Mar 2013

When I said, "have your breakdowns elsewhere", I did not mean away from this site. That is what we are here for. I meant to try to be calm around your Mother. 

jimwins's picture
jimwins
Posts: 2071
Joined: Aug 2011

Has she been having bowel movements?  Constipation can be a real problem during and after chemo.  I had issues during the first cycle and was very uncomfortable.  Pain meds can also constipate.  I would keep calling the doctor's office.  There's other stuff they can give her for pain.  I had a list of things (warning signs) and was told to call and or come back to the cancer center if I experienced any of them.  I had to go back twice (once because I needed a transfusion due to low hemoglobin and another time because I had a fever over 100.5 degrees).  

I'm sorry she is having a difficult time and I hope things improve soon.

Hugs to you guys and your mom,

Jim

nhldaughter
Posts: 69
Joined: Nov 2010

Thank you for the words. Rocquie, we absolutely make sure she does not see our breakdowns. Around her we laugh and have the TV with her favorite shows on. We tell her that I'm on a great website where other patients give me advice. I ask her for her symptoms and then reassure her after I hear from you all.  She gets back messages with her favorite lavender lotion from my sister :), when she can tolerate to be touched. Jim, she is not constipated. We have it under control. She has a BM per day. So I guess that is why we panicked more. The doc called back and said you can give more pain meds. 

it does make me feel better that the first round was the worst for some. It gives me hope. I also like the words of "don't guess pain and just manage it". I hope we can make ourselves be in that frame of mind. 

As for prayers, I do them around the clock.  faith is what gets us through the days. 

Roya

jimwins's picture
jimwins
Posts: 2071
Joined: Aug 2011

We sometimes offer advice or ask questions that may be obvious but it all comes from a good caring place.  Sometimes we just don't know what to say but try to offer helpful suggestions.  Hopefully the pain is a result of the tumors shrinking and it will  be resolved soon.  just know we are here for you guys.  I'm glad you are using humor - it's a good tool for her and yourselves.  Hell, everyone here knows how silly I can be times ;).  Whoever said "Laughter is good medicine" was so right :).

I hope your mom is feeling tons better today.

Hugs from across the Internet,

Jim

 

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Daughter

 

Just wanted to add a suggestion that may help your dear mom.

I was told that taking CLARITIN a day or so before the neulasta injection and continue to take it daily till after the injection, will really help to lessen or even completely prevent the associated pain that you feel with the neulasta.

Many women on the ovarian board and other boards do this and have a great result. Just be sure that it's Claritin and not claritin -D. You should ask the nurse or onco about it too. I'm sure they have heard of this also.

Sending you and your mom gentle hugs and wishes for much improvement daily.

Hang in there, you are doing a wonderful job.

Hugs

Lisha

Rocquie's picture
Rocquie
Posts: 510
Joined: Mar 2013

I hope your Mom is feeling much better today. And I hope you and the rest of the family are feeling better as well.

I'm still praying. . .

Rocquie

 

nhldaughter
Posts: 69
Joined: Nov 2010

Dear friends, her pain got worse and fever of 100.8 this morning. Rushed her to ER. Her platelets and WBC is low, 500 WBC. They gave her morphine. Got in touch with her oncologist and he told this local ER to admit her. I wish we were close to UCLA so she could be admitted there where her doctor is. This local hospital doesn't even have an oncology unit. I hope she gets better and they agree to transfer her. Just 5 days ago WBC at discharge was 3500. I don't know... This is torture. 

Shoopy
Posts: 210
Joined: Jul 2013

Daughter,

I don't know if I'm comparing apples to apples here but I have my blood counts checked Tues, Thurs, and Sat--well...the doctor wants it checked that often.  When I left Roswell Park on 8/1 after my first R-DHAC treatment, my WBC was over 5.0 (minimum for a healthy adult is 4.0).  By Tues, 8/6 it had dropped to 0.23.  Thurs 8/8 it was 0.29.  Sat 8/10 it rose to 1.29.  Tues 8/13 it was 3.96.  I have heard that it is normal for WBC to drop 5 days after chemo.  I have also heard that once it starts rising...it can rise quickly.

So hang in there.  Keeping you in my prayers.

Karl

jimwins's picture
jimwins
Posts: 2071
Joined: Aug 2011

I'm sorry she had to be admitted.  Please keep us updated and hang in there.  

Jim

nhldaughter
Posts: 69
Joined: Nov 2010

She showed an infection in her colon. Some neutropenia colitis they called it. She has been in miserable pain all day. They give morphine, but it wears off quickly. They just did some other tests to see if there is priferation in which case if we choose to an emergency surgery of the colon. What is extremely scary is that  she is just at a local hospital and we tried to call and email her UCLA oncologist and he simply ignored us. I think he barely answered to the ER doc and that's it. So the local doctors will just work on her. We feel very stranded and scared. Her pain gets worse as time goes by. I want to face the oncologist and ask him what kind of care is this???? Is he not human??? We haven't slept for days. Two days in a row we called and emailed him and told him the stomach pains and he brushed it off saying its just the neulasta. Now he disappears??? her WBC is at 500 btw, they've done tons of cultures and I guess we wait until tomorrow morning. i fear each minute. 

jimwins's picture
jimwins
Posts: 2071
Joined: Aug 2011

Gosh, Roya.  I'm so sorry your mother is having to go through this.  It looks like they are narrowing down the problem and hopefully the cultures will provide some answers and lead to beneficial treatment.  I hope you're getting some rest now.  I just happened to wake up early and decided to get up and make coffee and check the site.  

Sending warm, postive thoughs, prayers and hugs,

Jim

allmost60's picture
allmost60
Posts: 3173
Joined: Jul 2010

Hi Roya,

 Ohhh..I am so sorry your mom is having such a hard time with this first round. My heart hurts hearing how hard this is on all of you and her. I don't know what to say about her Oncologist giving you such limited information and being so cold. It's really frustrating to read and not have some solid advice to give back to you. It's good she is being seen and taken care of at the hospital, at least you know they are doing what they can to help her. I will say a prayer for your mom tonight and hope she has a turn for the better by morning. Hang in there and know we are here for you. Much love...Sue

nhldaughter
Posts: 69
Joined: Nov 2010

Thanks, sue and all. She's been in the ICU for almost a week now. They couldn't figure out what the infection was. Finally they said its C-diff and thyfilitis. New things come up each day and she is under the care of 5 specialties as a result of the new issues. Please continue to pray for her. Her bowel needs to wake up before anything can improve. 

DadysGirl
Posts: 322
Joined: Aug 2011

We were allconcerned about your Mom and your family. Hoping there will be no new issues and all the current ones will be resolved very soon. Please take care and keep us posted hopefully you'll have positive posts soon...

Love...

MChantal's picture
MChantal
Posts: 105
Joined: Apr 2013

Hi there nhldaughter,

I have been reading over your mother's past week and I have meant to write earlier. I am so sorry your mother has to go through this. On a positive note, lets be thankful that they know what the cause of her pain is/was. I know that for normal individuals/patients C. diff is terrible and to imagine your poor mother after chemo makes it ten times worse. Again tho, C. diff is treatable and she will overcome this. I know how you feel though, "Is every chemo going to be like this?"  After Kyle's (my fiance) first round of chemo we were rushed to the ER due to his heart beating at 180 BPM. Talk about scary as he was thrown into a code room with doctors and nurses surrounding them in an attempt to bring down his heart rate. However, we overcame that issue and now he has completed his 6 round and ready for his stem cell transplant.

As for your mother's Oncologist, that makes me so upset. How dare he/she make you and your family feel like that especially during this time. If I were you, I would be calling nonstop (because that is what I do-I think Kyle gets upset with me sometimes for that ha). This is your mother, your mother's life. DO NOT feel like you are bugging them or being an annoyance. They are supposed to be there to help you. I think it’s the nurse part that is coming out of me when I say all this. I cannot stand when some doctors seem to be so inconsiderate or merely not take you serious. I am sorry nhldaughter.

I will say a prayer for your mother tonight and of course, for you and your family as well. I know as hard as it may be right now, think positive. She will overcome this. She will. Just a little bump in the road.

-Michelle

jimwins's picture
jimwins
Posts: 2071
Joined: Aug 2011

Just wanted you to know you are in my thoughts.  C-Diff is so utterly common but treatable.  One of the side effects of chemo is  when our immune systems are impaired, we are vulnerable to all kinds of things either that we pick up or that are already in our bodies. 

Sening hugs and positive warm thoughts for your mother,

Jim

nhldaughter
Posts: 69
Joined: Nov 2010

Hello friends, I disappeared as things got more complicated. She was in the ICU for 11 days, then moved to telemetry. After an aspiration of fluid from her stomach (due to the c diff and thyfilitis, thickening of colon) they found some adnocarcinoma cells. This means that she has some GI or gyn related cancer in addition to the lymphoma. Once she became stable we took her to City of Hope Cancer center. she got admitted aNd they still haven't figured out the origin of the second cancer. She is better and we took her home but we are at a loSs. She was supposed to be on her 3rd cycle of epoch by now. All is put on hold. We go tomorrow to see if the latest fluid has any light to shed. It's been very tough. Please pray. 

NANCYL1
Posts: 256
Joined: Jun 2012

 

You emailed the doctor?  Won't he let you call him?  He is working for you; he is responsible.

You could call possibly the American Cancer Society, whose board we are on, for help.  If I were in your position and had no idea what to do, I would call them.

Nancy

NANCYL1
Posts: 256
Joined: Jun 2012
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