advise please

terrismom · Regular Joined: 19 Mar 2009 Posts: 46

My daughter had to have 2 units of blood and platelets last wed. She had her last chemo of gemzar/cisplatin the week before that. She has had a hard time with this chemo. She is due to have it again this coming wed.(1st), She is still nausated. The only thing I can get her to eat is chicken broth. And she does not always keep that down. They also put her on the fentanyl patch. Along with her oxcodone pills. She is not taking as many of the pills since the patch however. Is this normal to still be sick 2 weeks after the last one? I'm so afraid she isn't going to continue with the chemo if it is not going to get any better. I know it's her decision, but as a mom it just feels like, if she does that, it takes all of my hope away. And I know all the arguements, of it being her decision,( I would never say this to her.) I do not want her in more pain that is necessary, but I don't think I can give up all hope either. I'm sure there is others on here that have lost a child to this terrible thing, but it sure feels like I'm the only one that has. I just don't know how to accept this terrible thing. Seems like all I do is cry.
Sorry for feeling sorry for myself when there is so many going through this awful diesase.

Thanks
Monell

onecoyote · Senior User Joined: 15 Jul 2008 Posts: 150

Hi Monell,
I am so sorry to hear that your daughter is suffering. My husband made it through only one round of initial chemo when he and I made the heart wrenching decision to stop. The chemo had kicked his butt so badly that we thought this outweighed the benefits. Now he is on Hospice, he is comfortable, happy and eating like a horse. I am not kidding myself that he isn't sick, I now can just focus on his happiness and lack of horrid side effects that stole his quality of life.
No one wants to lose a loved one, I can empathize with you since I am a mother too. I just don't think I could watch all the suffering that they go through in the hopes of beating this monster.
The doctors gave my husband barely any time after he stopped chemo, yet here we are more than a month later and he looks and feels stronger than he did before the chemo. I am glad he is having some quality time no matter how short it may be.
This has got to be tough for you and I pray that things work out for the best,
Charlene
_________________
Husband Danny, age 66,
diagnosed squamous cell June 6, 2008,
Right pneumonectomy performed with no adjuvant chemo or radiation on Sept. 2008
Metastatic lung cancer in the ribs, scapula and right kidney raised it's ugly head May 2009.
Renal cell carcinoma diagnosed May 2009
One round carbo/taxol, too weak to continue
Cancer racing like a freight train
Held my husband's hand when he passed away September 29, 2009

melkissa · Posted: Mon Jun 29, 2009 11:04 pm Post subject: Re: advise please

I completely agree with the previous post. I hope she becomes more comfortable soon. It must be hard to watch her be in so much pain but also want to keep the hope alive too. Big HUGS to you both.
_________________
My dad was diag w/nsclc stage 4 & mets to spine & hips on 11/08 at age 43. Large mass on R lung & collapsed L lung. No surgery so chemo & rad 5d/wk. No results. 4/09 rushed to the hospital b/c breathing issues. Hooked up to o2 & treated for infection. Released when o2 levels were good w/help from Hospice at home. In Hospice as of 6/2/09. Passed 6/10/09. Missing you forever daddy.

terrismom · Regular Joined: 19 Mar 2009 Posts: 46

I took Terri to the er sunday nite. She couldn't keep anything down. Even her meds for nausea. So finally sunday afternoon my husband and I decided to go up to er and see if they could give her something in a IV for it. They did blood work, and found her potassium was very low, so they kept her and started potassium by IV. Wednesday the 24 th when they did blood work in lubbock, it was a little low ( 3.4) it had fell to 2.5 by sunday. It came up to 2.9 monday morning so they kept her another nite. She has had 3 bags of potassium. Hopefully in the blood work today it will have come up to normal so she can go home. They said with it being this low, she could have lots of trouble with her heart. How do you know when it drops like that when they only do blood work every wednessday before chemo? And what causes it to drop like that? Her heart rate was staying in the low 100's so they put a heart monitor on her yesterday afternoon. She is feeling much better thank goodness. Is there any signs of potassium being low that I can look for? Does the gemzar/cisplatin usually cause this? Or is the cancer being in the Adrenial glands more likely the cause?
Thanks everyone yall are great

Monell

onecoyote · Senior User Joined: 15 Jul 2008 Posts: 150

Hi Monell,
What a roller coaster ride you and your daughter are on. I am not a doctor but I can tell you from a metabolic standpoint how my husband presented. He has had a few bouts of hypercalcemia (too high calcium in the blood) caused by the cancer tumors. First thing to start with him was inability to swallow and total lack of appetite.
Many of the electrolytes in our bodies cause seemingly unrelated side effects when they get too low or too high.
Hypokalemia, too low potassium, causes heart palpitations, diarrhea, vomiting and shortness of breath. These all present depending on the severity of the shortage of potassium. Until you have one bout it is kind of hard to figure out what is causing these symptoms.
I wish you and your daughter all the best and to get this one bump in the road, squared away.
Hugs for strength,
Charlene
_________________
Husband Danny, age 66,
diagnosed squamous cell June 6, 2008,
Right pneumonectomy performed with no adjuvant chemo or radiation on Sept. 2008
Metastatic lung cancer in the ribs, scapula and right kidney raised it's ugly head May 2009.
Renal cell carcinoma diagnosed May 2009
One round carbo/taxol, too weak to continue
Cancer racing like a freight train
Held my husband's hand when he passed away September 29, 2009

melkissa · Posted: Fri Jul 03, 2009 9:46 pm Post subject: Re: advise please

Hoping everything is going better now.
_________________
My dad was diag w/nsclc stage 4 & mets to spine & hips on 11/08 at age 43. Large mass on R lung & collapsed L lung. No surgery so chemo & rad 5d/wk. No results. 4/09 rushed to the hospital b/c breathing issues. Hooked up to o2 & treated for infection. Released when o2 levels were good w/help from Hospice at home. In Hospice as of 6/2/09. Passed 6/10/09. Missing you forever daddy.

simplyklb · Posted: Sat Jul 04, 2009 2:19 am Post subject: Re: advise please

Hi,
I am so sorry that your daughter has to go thru so much with this terrible disease. Sad

I know how terrible lung cancer is... I lost my dad to small cell lung cancer on Oct. 15th last year. My mom has non small cell lung cancer. She did six rounds of chemo and 35 radiation treatments last year. We just found her cancer is growing again. Mom will be starting Alimta on Wed., July 8th.

Kristi
_________________
Dad - Andy, 70, diagnosed with SCLC in May 2008
2/20/38 - 10/15/08 Fly high, Dad!
Mom - Jackie, 67, diagnosed with NSCLC in May 2008

terrismom · Regular Joined: 19 Mar 2009 Posts: 46

Well her potassium was normal on tuesday when we left the hospital. Went to lubbock for chemo on wednessday and it was back down to 2.7. They gave her more through the IV. She wanted to go camping for the 4th, so we took her. She wasn't able to get out of the rv but once, but enjoyed looking out the window. Her feet and legs are so terribly swelled. They don't even look like feet. To the point of turning red. They said not to give her any of the water pills, that they was not going to do any thing but lower her potassium. That her feet swelling was the cancer and nothing we could do about it. Has anyone ever seen this and if so was there anything that helped??? Her legs as getting very week. They gave out on her the one time she did get out of the rv, and was a real chore to get her back up off of the floor. (she did good till the last step up). She hasn't ate since yesterday, and very little then. I just wish I knew how much of this was the cancer and how much is the chemo.
Another question is on the blood work that they do weekly before chemo, I understand that the CA is the cancer marker, but what is the LD??I think that has something to do with the liver fuction but I'm not sure. Am I right? Her's is up to 418. The cancer marker did drop from 103.4 to 101.6. I think that is somewhat of a good sign right?
Sorry to sound so stupid about all of this, it really isn't the first time I have ever taken care of a cancer patient, but nothing seems to be the same with hers.

Thanks everyone. Don't know what I would do without all of Yall. I have three other children, and a very understanding husband, but for some reason I feel like I am in this battle all alone.

Monell

terrismom · Regular Joined: 19 Mar 2009 Posts: 46

Terri had another round of chemo this past wednesday. By 6 pm she was sick. They give her meds in the port to help with this, plus she has two different meds for it. One is am 8 hour one and the other is a 6 hour. They told her to take the 8 hour one and then in 4 hours to take the 6 hour one. To do this for at least 4 days after each chemo. Well this round was really bad. She has been throwing up since wed. So the pills arnt staying down long enough to do any good. I took her to the er this morning for fluids and meds for nausea. Her potassium was a little low again so they gave her some. She felt much better. They told her to take the 8 hour med as soon as she got home. She did and went to sleep. Woke up in 3 hours sick!! She has had 2 sips of broth to day. At least next week is her off week, so maybe she can recoup a little. Has anyone ever been able to have the liquid meds for nausea at home? She has a port, so was thinking it would be so much easier if we could do it at home when it gets really bad. I'm not sure if this is even possible. We don't see the dr till next wed. Her port is an internal one but if they left the access in after chemo I could access it. Sure would save her a lot of agony.

Her CA 125 cancer marker dropped 40% this week. Down from 101.4 to 65.6. So I'm thinking this is a good thing right? If so how much of a good thing?

I appreciate everyone answering my questions. And letting me just ask them.

Thanks to all
Terri's mom
Monell

dano · Posted: Sat Jul 11, 2009 4:42 am Post subject: Re: advise please

Hello teriesmom;
I so sorry about all the problems your daughter daughter has experienced. But it seems like enough is enough already I think it is time for a new set of doctors! If her swelling she experiencing is going to be called normal, I don't think so. I have not read all her history here but I don't like what I'm hearing now. I had a DVT in my left leg and it messed the veins up in that leg pretty bad to the point that my leg is always a bit swollen, I'm supposed to wear the pressure socks to help prevent worse permanent damage. But every time I take them off the are balled up somewhere cutting off circulation them selves and they are uncomfortable. My pulmonologist said that some veins are damaged permanently. I hope your daughter is on blood thinners to help with the swelling.
Dan
_________________
55 year old male, Diagnosed Nov. 9,2007 with NSCLC IV with Mets to the lymphs and brain
Had full brain radiation treatment in Jan 08 treatments now every 4 weeks with Alimta, taking Lovenox for blood clots, Now working full time
http://cancerforums.net/viewtopic.php?t=9993

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2400

Hi Monell,

I don't know what to tell you about the swelling because they won't put her on lasix. Can't they do that and give her potassium too? My husband had a reaction to Taxotere that caused water retention and it was awful. The swelling was everywhere and it greatly impacted his lung function too. They handled it with both meds. I hope they come up with some alternative. Is her liver involved? That produced horrible swelling for my Dad too. They had him in the hospital and did some type of flushing thing to his system to reduce the swelling. His skin was so thinned out on his legs that it was weeping.

I'm sorry to hear that the anti-nausea meds aren't staying down. They might be able to give her a suppository to use instead. Do check with the doctor. I remember my son having those as a little one when he couldn't hold a thing down.

The numbers coming down are a good sign or it should be a good sign. We only did the CEA markers, so I have no clue about the significance of that big of a drop. Don't forget, everyone is very different in how those numbers read too. These aren't lung cancer specific tumor markers either -- merely generic marker tests. A drop is a drop, so lets think that this is a very good thing! Very Happy

I hope you get some of Terry's issues resolved so she can be more comfortable.

God bless you for being such a great Mom.

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

GOERGE · New User Joined: 07 Jul 2009 Posts: 2

Might I suggest two other options if all else fails:
1) I read in, I believe, the Dec. 08 issue of Scientific American of a therapy that proved successful in a number of cases near the turn of the century. The particular physian injected a particular type of bacteria into the patient, causing a very high fever. It was discontinued because many fo the patients died from the treatment but it is being reexamined now.

2) Eosinophil therapy which works by stripping away the tumors immunolgical shield and restimulating the immune response to a Th2 profile.
The way it is performed is by exposing the patient to helminth (multicellular parasite) antigen. Then freeze killed ova from that same helminth is injected into the tumors. The ova acts as an adjuvant so that the tumor is now immunolgically responded to as if it were a helminth.

kevinz7 · New User Joined: 12 Jul 2009 Posts: 4

Heavenly Father I lift up to you Terry, please open her heart and her mind towards You allow her to understand there is power in prayer we just need to seek your face. Father I ask that You bless her and send an angel when she sleeping to heal her of her issues. I ask this all in according to Your will in Jesus name I pray Amen.

terrismom · Regular Joined: 19 Mar 2009 Posts: 46

Yes they did try a water pill, and potassiium pills, but the level still fell so they said not to give it. The adema is down yesterday and today. Thank goodness. Her tummy has finally settled down some today. She ate one little jello a bit ago. First since wed. I so worry about nutrition. She was crying with her legs. So I rubbed some cream on them. There is NO muscle in her calfs. She said it was hard to explain what they felt like. Kinda like a burn with out the burn, She said it felt like they were half way between paralized and not. What ever that is. Also said her fingers were tingling. I don't know if it's the chemo or not. Her dr has never said anything about any vitamins. So I don't know whether to give them or not or what kind. Guess I'll ask him wed.
Why can't all caregivers be told what is going to happen and what to do when it does?? Sure would relieve a little stress. We see the radialogy onc. wed. he is a lttle more informative than the medical onc. is so maybe we can find some answers

Thanks everyone
Monell

terrismom · Regular Joined: 19 Mar 2009 Posts: 46

We went to the radialogy onc wed. She was low on potassium again so he gave her potassium, some fluids, and some atavan thru her port. He ordered scans of her legs because of the swelling. (something the ohter dr should have done 2 months ago). She has two very large clots in both legs. I have to give her a shot of lovenox each day. He said to limit her walking, so I went and got a wheelchair. I figure she may be restricted on her walking, but not going to stop us. LOL. He said not to rub her legs at all. WELL, that is what I have been doing. Scared the crap out of me. I could have killed her if they had broke loose. She had lost 16 lbs in the past 6 weeks. I hope most of that is from getting off the steriods.
He ordered a mri on the brain. That will be done on the 21st. Hopefully it wont be bad news. Her husband called her last nite and told her he wanted a divorce, that he just could not go through this!!! (he has only seen her one time since he brought her to me. the first of feb.) So now we have this on top of it all. My husband say "stressed spelled backwards is desserts. so what the heck lets have seconds" hahahaha

Monell

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