Need help sorting this out...

[oldrider67]

Hi all.

I've been reading this forum for a while, for both information AND inspiration, and finally registered and ask for some help.

This is about my mother:

63, diagnosed limited SCLC in May 2005.

May to August chemo every 2 weeks and radiation 5x/week.

Hospitalized.

Back home for my wedding (for 2 days then back in hospital).

Severe esphogitis.

PIC line.

August scan showed mets to spine.

52 days in hospital.

morphine drip.

oxygen.

Pallative care now.

PEG tube.

gall bladder removed.

September HOME!! no more morphine, but tons of pain meds.

I'm #2 caregiver.

Mom so, so tired- hardly ever out of bed.

I have a few questions I HOPE someone can answer:

1. earlier this week, her Dr. told her 3-6 months left. My question: is that from NOW of from the time of diagnosis? (I wasn't there at the appointment)

2. About her pain meds: she can get VERY "loopy" one minute, and the next she is sharp as a tack. Dad says it's because of her pain meds, but I have read that cognitive functions decline- with or without brain mets.... is this correct? (Example: i gave her an insulin shot, and literally 5 seconds later, she could NOT remember it and wanted me to do it again.)

3. I'm trying to get her to get out of bad and do things, but she'd SO tired... PLUS, the family has been planning a family vacation in november for over a year... her Dr. said she can go, but WOW, she's in bed 90% of the day... thoughts?... and what about ALL her meds/supplies... is this really going to happen? I HOPE so for her sake (it's giving her something to look forward to, you know?)... but...

I had more... I should have written them down...

Thanks and I hope to hear from someone soon.

D.

[cindi o'h]

hi D.

I have no experience in this arena. I just want to welcome you to our group. Someone with some insight will be along to help you out. Sounds like you do need to make another call to the onc. for clarification though. And maybe there is someone there locally with experience that you can bounce some questions off.

Good luck. (your mom sounds pretty sick. I am glad that you are there for her!)

Cindi o'h

[Calintay]

Welcome and sorry to hear about your mom. First only God knows when the time will be the estimated guess could probably be either from Dx. or that day. As for your trip I hope your mom has the strength and energy to go with you guys. Many prayers for you and your family

[Ann]

Hi D. Welcome to our group. I know it's a tough place to be but you will find a lot of advice and support from the members. My husband had SCLC but his was extensive. When we first saw the oncologist he was told 3-6 months without any treatment. He had chemo and radiation and lived for 10 months after diagnosis. Please don't let this alarm you. Most everyone here will tell you to ignore statistics, as each patient is different. I would speak with your moms' oncologist right away and get the information you need. If she spends 90% of the time in bed and is in a lot of pain, I would think travel plans are not a good thing right now. My husband had mets to the spine and the pain was terrible for him. Have you thought of getting a second opinion for your mom? I hope you get all the answers you need. Please feel free to PM me if I can help.

[oldrider67]

I guess I should have also mentioned:

Chemo and radiation from May to August had less than 15% effective rate.

Sept 2005 diagnosed extensive SCLC.

10+ blood tranfusions.

wow.

[Cindy RN]

You have really been thru it!

I was diag. in Feb 2001, did 9 mos of chemo, had a yr of remission, then it came back, another 6 mos of chemo and rad. this time. Now it has been 2 yrs and 2 mos since last dose of chemo. Mine was extensive to begin with. I had real good response to the treatments.

Now for your mom. She may be tired from all the treatments. Those will wear you out for months! It may be the pain meds, it could be the cancer. No way of telling for sure. Sounds like the Dr needs to know about the confusion. Some of us get what I call chemo brain! I do forget the silliest things. I mean totally forget them. I have had MRI's of the brain and so far no mets there.

Also you said she had mets to the bone? That may be some of the pain, she might do well adding a strong anti arthritic med, ask the Dr. Maybe then she can cut back on the pain meds.

I take 2 Darvocett 2-4 times a day. I have alot of joint pain without them. I was on Celebrex but it costs so much I had to quit, the Darvocett work well and are cheap.

As for the dates, as said, everyone is different. Me they said 3-6 mos without treatment and maybe 1 1/2 yrs with it. It is almost 5 yrs since diag.

You did not list the pain meds so unsure what is too much.

Next for the vacation-you may need to play that one by ear. She does not sound like she's up to it right now. Maybe a short weekender might do??

Hope this helps. Ask anything here. Someone has been there I promise.

Love Cindy

[oldrider67]

WOW... so much caring and support. You guys are amazing. I hope that someday I can help someone as you all are helping me... your strength is just incredible. (tears falling as I type)

Mom's med list:

I don't even know if they are considered typical, extra strength, or what, but here they are:

Protonix

Fentanyl

Carafate

BMX

Fragmin

Synthroid

Lexapro

Lopressor

Ambien

Proventil

Atrovent

Phenergan

Coumadin

Magonate

Reglan

Insulin

[sharyn]

My goodness, you have alot going on... the list of medications is incredible!!! First off, Welcome, I am glad you found us as you will discover, this is a wonderful place for comfort and to let off steam....

My dad had alot of problems with cognitive function, but, he had a brain met... although it was treated and shrinking. I don't have any answers for you as each case is so individual and I would not want to give you misleading facts... you need to ask these questions to the Onc...they are VALID questions that need to be addressed. If the meds are indeed giving her congnitive problems, then that is a problem easily corrected.... The ambien can cause confusion, I took Daddy off of that. The list of meds are so extensive, that, given alone the particular drug may be okay, but given with another on the list there could be problems. I wish you strength.....

[daggiesmom]

Don't know if this will help at all but here goes -

First off, don't let any doctor tell you how long you have - only God knows that.

Secondly, she's on ALOT of medicine. Maybe take a step back, get together with the doctor and review all this medication to see maybe if they inter-act in any way. Could be causing side effects.

Thirdly, I think I would postpone traveling right now, at least until she gets a little energy back. Even if she can just walk around her house a few times a day. Exercise, though hard, can actually give you more energy rather than just lying in bed. I know it's hard but may be worth a try.

Tell you're Mom I'm a 3 and one half YEAR suvivor, and that there are many other people here with Limited SCLC who are in the "year" category, not the "month" category. Have faith and hope and let us know how she's doing.

Joanie

[jorja]

Hi D and welcome,

I agree with Joanie. You need to talk to the doctor about all of her meds. I don't like it when I hear doctors say about how long someone has to live. When I found out about my dad, that was the last thing I wanted to hear. Please try to be optimistic. I know it is hard. My dad made it to the year mark in august. Right now he is NED. There are lots of people on here who have been NED for a few years.

My prayers are with you.

love,

jorja

[Jyoung20]

Hey D!!

I wanted to welcome you to the site and let you know that I will be saying a prayer for you and your mom.

GOD BLESS!!

Jamie

[MilliBr1]

First welcome to this site. I agree with Joanie I would have her meds checked. I will be keeping all of you in my prayers.

[jcawork]

Welcomee.

I agree w/ everyone, its the meds, probably not the cancer. Her cncer may be extensive, but does not appear to be in any life threatening organs at this time.

For example, BP meds can waste you, anti depressants, sleeping pills can all make you too tired to care.

The Fentynal is the only pain med I saw. Where is the pain?

Is she having the spine mets radiated?

Jen

[ma's kid]

Welcome and I will add your mom to my prayers. Please do check with her doc about the meds and how's she feeling.

Libby

[Larry]

My Gosh i personally have not known anyone on that much medication at one time no wonder she is so bed ridden. Have you all gone over this medication's with your doctor to be sure they are not counter acting against each other? As for the life left i like most other's believe only god along know's but as whether from time of dx or at time statement made i'd venture to say it is from the time most recently told her.My sisterinlaw was given 2 week's to 2 month's and lasted 7 month's but just remember there are those who are still here who was not given much of a chance to survive. Good luck and hope she make's the trip.....

[Kel M]

Hi there,

My Mom died of SCLC in May of the year following a recurrence of the disease and its extensive spread in her body.

In terms of your questions:

1. I agree with the others - a lot of factors contribute to how long someone survives with cancer. Statistics are just that... statistics - they offer best guesses based on large samplings of data. My Mom was placed into palliative care in January and lived until the end of May. I might add she lived well and went to Florida in that time - so anything is possible!

2. Ah loopiness - my Mom was extremely confused when they were trying to iron out her meds - steroids, painkillers (fentanyl and dilaudid), insulin, fragmin, stool softeners, anti-anxiety meds, anti-depressants, etc... They needed to work on dosage and eventually got everything under control to minimize her problems. That said, my Mom developed pareneoplastic syndrome and this created balance and memory problems that she also had to deal with. She did battle back from that though - so it's possible. I am interested that your Mom is taking both coumadin and fragmin. My Mom was originally on coumadin for a pulmonary blood clot, but it had to be changed to Fragmin when other problems developed.

3. Your Mom's tiredness may be overcome if its her medication that is causing the problem. I would talk to her Doctor about it all. My Mom became energetic, dare I say even rambunctious, during her hospitalization once she started to feel better. She started to believe she could make it to Florida and enjoy it - and sure enough she did!

Wishing your Mom and you all the best - I hope she is well enough to make the trip. I sure appreciated the opportunity to spend some wonderful time with my Mom before she died.

Take care,

Kel