Extensive sclc - 1246558

marialee
Posts:24

My mother in law was diagnosed on Apr 30,2012. Extensive small cell lung cancer, spread to many lymph nodes in chest, two tumors in the liver (one quite large). A cat scan done to try and diagnose stomach issues showed the cancer. A liver biopsy confirmed and gave SCLC diagnoses. A bone scan at the end of May suggested it may have spread to spine. We did one round of chemo July 4, 5, 6th. Pain got worse, another scan mid July shows it had spread to spine for sure, in 2 spots and one was severe. She had to postpone chemo and do 5 days radiation to spine Jukly 23-27. The next week she was very weak and had to postpone chemo again for a week. Yesterday she began chemo again and is feeling a bit stronger. No doctor will give us an idea of time, they just say we are looking at months. She has had COPD for years...smoked since she was young, has high cholestrol, high blood pressure and digestive issues oftern. Her heart is strong. Can anyone give us more information on what we can expect?

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Reply # - August 9, 2012, 06:53 PM

JimC
Posts: 2753

Hi marialee,

Unfortunately doctors often cannot predict with much accuracy how well a patient will respond to treatment or how long they will survive, so that's why her doctors are being a bit vague. A look at Dr. Gadgeel's post on treatment of small cell lung cancer may give you an idea about what to expect: http://cancergrace.org/lung/2010/08/07/treatment-of-small-cell-lung-can…

I hope she continues to tolerate her treatment better and responds well to it.

JimC
Forum moderator

Reply # - August 9, 2012, 08:44 PM

Dr West
Posts: 4735

Doctors can use evidence from groups of other patients to predict how a group of patients will do over time, but we aren't that good at predicting how an individual patient will do. The information in the link about should provide some guidelines. Beyond that, if a person with small cell lung cancer is actually demonstrating progression with first line treatment, that's a worrisome finding that would make me concerned that survival is likely to be in the shorter end of the spectrum of possibilities.

Good luck with her current treatment.

-Dr. West

Reply # - August 10, 2012, 04:10 AM

marialee
Posts: 24

thank you JimC and Dr.West. I have read the link and it was helpful. I am the type of person who needs to prepare and with the unpredictability of this disease I have been thrown in a whirlwind but still trying to help my husband know what to expect.
I didnt mention that she is also 73 years old, and has lost about 30 lbs. I feel that the end is close, I dont know if that is just because of all the research I have been doing or what. She had day 2 of round 2 yesterday and last night was disoriented and confused again. They have checked her blood and no extra calcium which is what I first suspected from my research on the bones deteriorating. Could a brian met have come on this quickly? We just had a scan done July 17 and it was clear. Or perhaps it is just the meds or stress from the whole situation.
My sister in law is home from across country to spend a week with her before we get too far into this. We have to sit down tonight and talk about what my MIL wishes are before my SIL has to return home, that will be a very difficult discussion and I worry about my husband, neither of us are in good health even though we have just entered our 40s.
I am rambling...sorry.
Please let me know if I just should have started another discussion because I am new to this and that just occured to me.
Maria

Reply # - August 10, 2012, 06:35 AM

catdander
Posts:

Hello Maria, Let me welcome you as well to Grace. Your posts are fine here but you are welcome to post on a new thread next time if you wish. I split this thread so that beginning with your first post it divided into it's own thread. Threads are labeled so others can access specific or similar information. By splitting it makes it easier for a doctor to enter the conversation without figuring out where one person's ends and the other starts. No problem.

I've requested an oncologist with a specialty in sclc to comment. You should hear something no later than by this evening.

Janine
forum moderator

Reply # - August 10, 2012, 05:18 PM

drpietanza
Posts: 7

Hi Maria,

I am sorry to hear about your mother in law. She definitely seems to be having a difficult time. I agree with Dr. West, we do use evidence from other patients to predict how a certain person will do, but we can never be sure. Certain things concern me about this case, including the amount of weight loss prior to being diagnosed and the worsening of pain, which on scans revealed that the cancer had worsened. As Dr. West states, progression during first line treatment does seem to correlate with shorter survival. Regarding the recent confusion, there are multiple contributors - the pain itself, the narcotic medications, dehydration, and the chemotherapy itself. Certainly, if the disease worsened with chemotherapy, brain involvement could have developed as well. However, the other things should be corrected and if the confusion persists, it is worth repeating imaging of the brain.

Good luck with your discussions and treatment.

Best,
Dr. Pietanza

Reply # - August 10, 2012, 08:06 PM

marialee
Posts: 24

thank you so much for your imput on this. This is such a wonderful thing you are doing by helping people understand. I think my MILs oncologist is a wonderful doctor but he has so many patients there is just no time to sit and discuss things with him. On our last appointment we only had about 5 minutes. The pallative care team is wonderful and they help us understand some of what is going on. What is confusing me is that her back pain and mets to the spine got worse after the chemo but the oncologist said there was a bit of clearing "to the speckled areas" in her lungs. Doesnt that mean the chemo did work some? Or perhaps he was just giving her some hope. Also, we had to postpone the chemo for 2 full weeks to allow the radiation on the spine because one of the vertibrae is quite damaged and they said if we did not then it would fracture and probably paralyze her...would this have changed her prognosis? I ask that but I am sure the answer is yes in this agressive cancer.
The weight loss was over a years period before her diagnosis...if this cancer is so agressive is it reasonable to attribute the weight loss to that? Wouldnt this cancer have done much more if it has been there for a year already or is this the way it is before they catch it? I appologise for so many questions but I just need to know what we are dealing with here. Both her and my father inlaw are still smoking alot (he smokes 1.5 to 2 packs a day and her almost a pack a day). I am scared to go into the house with all that smoke sometimes...although they do not smoke while I am there,the house is still filled with it. Most times it is still heavy in the air. I worry about my husband and I's health being around this second hand smoke while we try to help them. I guess I just worry about everything to do with the terrible disease and I dont want to put myself at risk from the smoke either.

Reply # - August 10, 2012, 08:47 PM

JimC
Posts: 2753

HI Maria,

With regard to your MIL's response to chemo, the first thing to be said is that chemo doesn't normally provide a rapid response in bone mets. Symptomatic bone mets are often treated with radiation, which provides more rapid relief from pain. You may want to look at these two posts, which provide a good overview of bone mets and their treatment:

http://cancergrace.org/lung/2007/02/17/bone-metastases-in-lung-cancer-a…
http://cancergrace.org/lung/2007/02/18/treating-bone-mets-focus-on-radi…

It is also possible to have a "mixed response" to chemo, in which some areas of the cancer shrink while others do not shrink or perhaps grow. But since it is very difficult to see improvement in bone mets on a scan, I would not jump to that conclusion.

JimC
Forum moderator

Reply # - August 11, 2012, 02:45 PM

Dr West
Posts: 4735

The clearing does suggest that the chemo did help some, but I wonder, as Jim suggested, if this might be a mixed response, with some improvement and some worsening in different places. Her doctor would be better able to clarify that.

As for the weight loss, I do agree that there's good reason to presume it's a side effect of the cancer. As for why it started more recently than a year ago, one idea is that it needed to grow to a certain size to cause symptoms like weight loss. Another point I'd make is that unless you saw the cancer there a year ago, that number may just be an estimate -- as in a guess.

-Dr. West

Reply # - August 11, 2012, 08:14 PM

marialee
Posts: 24

thank you for your answers. Tonight she is determined to drive again. She is on so much pain medication she is confused all the time but now she thinks she can come off of the pain meds and drive her car again. One day at a time.
God bless you all for helping people.
Maria

Reply # - August 11, 2012, 08:31 PM

Dr West
Posts: 4735

Just please be careful and don't let her endanger herself or others if she doesn't have the reflexes or attention span to drive. It would be awful for her to get into an accident, possibly involving other people on the road as well.

-Dr. West

Reply # - August 11, 2012, 08:43 PM

marialee
Posts: 24

Yes, thank you Dr. West. We have been keeping her car at our place so she cant drive because she already did after telling us she wouldnt. I blame the pain meds for her not making good decisions about that and that is what I told her this evening, that we would need to have the doctor reduce the amount of pain meds and she how she does with that. Honestly I dont think she is going to regain enough strength to drive again. She doesnt realize how much pain she is in because she is on the 12 hour slow release meds and takes them around the clock. Even with these strong does in her she has pain if she stands or exerts herself at all. I dont think a reduction in the meds is realisitic right now but if the thought makes her feel better, so be it.

Maria

Reply # - August 12, 2012, 06:48 AM

catdander
Posts:

Maria, I just wanted to add my support for what you are doing to help your mil. I can really appreciate you giving hope. I think we all need as much as we can muster. Hope goes so much further than hope for cure or hope for another treatment or good scan. Your husband's family is lucky to have you.

Janine

Reply # - August 13, 2012, 06:49 AM

marialee
Posts: 24

Thank you Janine. My husband is really taking it hard, his health is going down hill since. I am trying to take as much pressure off him as possible but I am sick too. :(
Yesterday her VON nurse called us and said she run out of her Ventolin puffer and it was an emergency that we go right to the hospital to get one. This puffer is supposed to last a whole month but she has been using it so much that she used it all in about 10 days. I think they may have to put her on oxygen soon.
She says no way she is going on oxygen.

something new is happening every day and we are exhausted.
Trying to stay positive.
Maria

Reply # - August 13, 2012, 08:54 AM

laya d.
Posts: 714

HI Maria:

Just wanted to join the chorus of well-wishers here. I am so sorry that your MIL and the rest of you have been forced to deal with this horrible disease. I wish you all strength. . .

xoxo,
Laya

Reply # - August 13, 2012, 03:43 PM

marialee
Posts: 24

Thank you Laya, it looks as if you have had quite the journey with this as well. Thanks for replying, I am sending positive thoughts and prayers your way as well. :)

Maria

Reply # - August 25, 2012, 12:27 PM

marialee
Posts: 24

Just an update: MIL has been stable since last round of chemo, no real side effects and seems to have more strength. I have done so much reading on this subject that I know this is just very temporary and we seem to just wait for the ball to drop and cringe each time the phone rings. Can someone tell me how much time there ususally is between feeling better from the first rounds of chemo and radiation (to spine) and the decline again?

Reply # - August 25, 2012, 02:17 PM

Dr West
Posts: 4735

Oh, the problem is that that varies incredibly from person to person. It's usually not for several months at least, and it can sometimes be more than a year...so I don't think it's helpful to spend good time under the pall of "we're going to get bad news in the future". That said, I think it's easier to say that's it's easy for me to say from where I am. But many of the people here are doing a wonderful job of making the best of a good response without knowing what the future will bring.

-Dr. West

Reply # - September 8, 2012, 12:00 PM

marialee
Posts: 24

Well she has finished round three of chemo last week and no real side effects at all. They want a chest xray done on Tuesday to see the oncologist an hour later. I am wondering why they would not have ordered a PET scan at all. I keep reading how people get results from this to see how things are progressing. Considering it has already spread to her liver (2 tumors), spine (2 spots) and lymph nodes wouldnt this be helpful to find any further spread?? Also, I have read about blood tests that can tell us how far advanced things are but none of her doctors has mentioned this either. Should these be things I suggest be done or is there no bennifit of knowing if it has spread any further? So many questions...

Thanks for your help,
Maria

Reply # - September 8, 2012, 01:09 PM

catdander
Posts:

Hi Marialee, Good to hear from you. The typical mode of assessment at this point is a CT scan. A CT sees much more than an xray, enough to make any treatment decisions necessary. A PET, while often used for assessing isn't the standard of practice and even causes doctors to jump the gun on changes that are not necessary.
There are no blood test at this time to make assessments.

This may help explain things, http://cancergrace.org/cancer-101/2010/09/16/cancer-101-faq-assessment-…

Janine
forum moderator

Reply # - September 8, 2012, 04:34 PM

Dr West
Posts: 4735

There is no need to do a PET scan if a chest x-ray or CT scan will provide a clear answer about whether the cancer is responding or not. As Janine mentioned, a CT scan provides far, far more information than a chest x-ray, and neither I nor other experts consider the latter to be a sufficient assessment of response to therapy.

-Dr. West

Reply # - September 9, 2012, 10:19 AM

marialee
Posts: 24

Thanks Janine, the link was helpful. I am still concerned that they are relying on a chest xray to determine instead of a CAT scan. I know her disease is way too far long to cure anything but she is now complaining of pain in her left lower arm...she said it feels like she hit it really hard and bruised it but there is no bruise...she said the pain runs the whole length from her wrist to her elbow...I suggested perhaps it is just sore from the IVs they keep giving for chemo but she doesnt think she had one there. She is also much more tired the last few days...sleeping during the day which she hadnt been, and she wants to wean off some of the pain meds so she can drive again. (she is way to confused to be allowed to drive but she said the doctors told her she could if she was weaned off the pain meds...geesh).

Reply # - September 10, 2012, 01:13 AM

certain spring
Posts: 762

What a rough time you and your husband and your mother-in-law are having. You are doing the right thing in preventing her from driving, though I imagine that must be hard as it is such a symbol of someone's autonomy. It's also great you have the palliative care people involved - I hope they are giving you and your husband useful support.
I think it would be reasonable to ask (as in firmly ask) for a CT. You may find there is one already planned. My doctors use X-rays to take a snapshot of the state of my lungs on a given day (you mentioned your mother-in-law has COPD?) rather than to track the cancer. For that, they use CTs. And I would certainly ask for someone to assess the pain in her arm - it might be that there are treatments that could help. Best wishes.

Reply # - September 10, 2012, 05:11 AM

marialee
Posts: 24

Thanks Dr.West and certain spring, that was my concern about the x ray as well. The last CAT scan was in mid July and this visit with the oncologist is to asscess what we do next. She is to have her 4th round of chemo a week from Wednesday. Her oncologist is in the city and that is a 2 hr drive for us so they have waited until her oncologist comes to our town for her to see him. She really isnt up for travelling. We will see what he has to say tomorrow.

Dr. West perhaps you could tell me the significance of her blood pressure drop. She has always had very high blood pressure and has been treated for years for this. The nurses that come to the house have often commented that it is still too high even with the drugs bringing it down. Yesterday however they wrote in the chart that her blood pressure had dipped really low. Not sure if this is significant or not.
She is currently taking 6mg of hydromorphone slow release every 12 hours and has breakthrough pain meds of hydromorphone 2mg that she is taking a few times per day. She wants to decrease the meds so she can drive(I think it is a really bad idea). What I tried to explain to her is that the reason she is not in as much pain as she was is due to all the meds on board already...she thinks the 5 days of radiation has cured the pain. I think if she still has to take the breakthrough meds for pain then she is still having a lot of it? What do you think?

Thank you so much for all the insight, I appologize for having so many questions.

Maria

Reply # - September 10, 2012, 08:01 PM

Dr West
Posts: 4735

The way to determine her pain control needs is to begin to drop the long acting dose gradually and then see if she still needs medication for breakthrough pain. If she can taper down to no long acting pain medication and needs no or just a little shorter acting pain medication for breakthrough, then this is consistent with the radiation having worked well and quickly. On the other hand, if she's dropping the dose of the medication gradually and finds herself needing breakthrough pain medication, this will highlight that it's likely to be a mistake to keep tapering the dose of long-acting pain medication.

Blood pressure can drop because of all sorts of things, from dehydration to infection (usually serious infection), overmedication with sedating medicines, etc. I couldn't really say what the most likely cause is in her, but I wouldn't draw any major conclusions based on a single reading -- it's important to clarify whether there is a sustained trend or just a random isolated finding that is actually completely transient,

-Dr. West

Reply # - September 14, 2012, 10:31 AM

marialee
Posts: 24

Well, we had the appointment with the oncologist on Tuesday and he is very happy with the results from the chemo. Although so far he has only seen a chest xray he said compared to the one in spring the tumours have reduced in size some. He just said he can tell it is better. He is going ahead with the last round of chemo next week and then said he would have a CAT scan done the first of October and see her again mid Oct. He said if the chemo hadnt worked then she would no longer be here...that she would have had only 5-6 weeks if she didnt respond to the treatment. He said now it is just a wait and see thing, and if the tumours started to grow again within the next 6 months then he would have to try another chemo drug but he said it was a "nasty one" it started with a T but that is all I remember. he said if the tumour stayed the same size and didnt grow again until after the 6 month period then they could try the same chemo drugs again.
It is all so confusing. She spoke with him about the pain meds and he said to leave them as is until after the final round of chemo. She also mentioned her arm but no one really seemed concerned. She has more energy again after a few days of being very fatigued.
She just keeps saying "one day at a time" and we are just trying to focus on the present.
Thanks so much for your insight.

Maria

Reply # - September 14, 2012, 07:08 PM

Dr West
Posts: 4735

Maria,

Congratulations on her good response -- and I agree that with SCLC, a chest x-ray is often enough to give a clear indication of whether the cancer is responding or not. Often with SCLC, you can infer someone's responding just by their clear clinical improvement.

I suspect that drug he mentioned is topotecan, which is the most commonly used agent as second line for SCLC. As your oncologist said, it's also pretty common to return to the first line combination if it's been more than about 6 months between the prior chemo and progression of the disease.

Good luck.

-Dr. West

Reply # - October 5, 2012, 07:10 AM

marialee
Posts: 24

Thank you Dr. West, as always I appreciate your opinion on this journey we have been thrown into. She was able to complete her final round of chemo on Friday Sept 28. She had a CAT scan done on Oct 3rd and never did decrease any of the pain meds, in fact she had a huge increase in pain after her scan. She had severe diahrea that evening (possibly from the mixture she drank before scan). She said that she had sharp pains spreading from her buttock to her spine. It is the same pain she had that they discovered was the met to the spine which was severe and she had to have 5 days of radiation to prevent fracture. This time the pain is on the opposite buttock. The on call oncologist told her to double her long acting pain meds and take her breakthrough pain med as often as needed. She sees her oncologist on the 15th of Oct. She is fearing that he will want to do radiation again but he has said in the past that they would not repeat it until after 6 months and that would not be until Jan. Would they consider the radiation if there was a met in a different area of the spine?
My husband is worried that all of the pain meds will further tax her liver that already has many tumours, should this be a concern?
Thanks again

Reply # - October 5, 2012, 07:38 AM

catdander
Posts:

Marialee, I'm so sorry your mom's pain is worse. I don't think there should be any real concern about her liver because of the pain meds. The long lasting ones don't normally have much else in them besides an opiate of some sort and don't task the liver much. Even the break through meds depending on what it's mixed with shouldn't really be of major concern. Pain relief is the main concern.

Now, let's ask a professional for I am not. We should hear back within the day. But please, before you don't give her enough meds for pain call the cancer center.

As for radiation, usually palliative radiation is given as needed as long as it is in a different place, even then there are lots of exceptions.

Best to you all,
Janine

Reply # - October 5, 2012, 04:47 PM

Dr West
Posts: 4735

Janine is really right on all counts. Opioid pain medications shouldn't really be a major issue for the liver if they don't include Tylenol. And it's very appropriate to do radiation on a separate area that hasn't received prior radiation if there is a painful metastasis there.

Good luck.

-Dr. West

Reply # - October 8, 2012, 01:36 AM

Dr Gadgeel
Posts: 6

I agree with Dr. West. If the area being radiated is separate from the previous radiation there is no requirement that they have to wait for a certain time period.

I have not followed the entire thread. But did your mom also receive neulasta (or neupogen), an injection to boost the white blood cells. Sometimes these injections can cause bone pain about 7-10 days after the injection and the pain can be significant.

Two other thoughts- If your mom has bone metastases related pain, judicious use of drugs like motrin or aleve in addition to opiates can help control the pain. I say judicious, since these drugs can cause stomach irrritation ( these pills should be taken after meals) and cause mild damage to kidney function, particularly if the patient is not keeping themselves well hydrated.

Also, anybody who is on opiates it is very important to be sure that they are not constipated. Constipation could make the lower back pain worse. Hope this helps and your mom feels better

Reply # - October 8, 2012, 07:56 PM

marialee
Posts: 24

Thank you all. Now that you mention the Aleve Dr. Gadgeel, she was taking this along with the hydromorphone during the first round of pain from the bone mets but then the radiation helped so much she stopped them and she was also trying to get off of the long acting pain meds because she wanted to drive again. Now instead of the 6mg every 12 hours she is up to 12mg.(not the direction she was hoping for)
Over the weekend she had better control of the pain at this strength but it is making her extreamly tired and groggy all day.
I am not sure about the injection for the low blood count, she did have to postpone the last chemo round for 1 week because of low counts, she started on the 26th of Sept instead of the 19th. Perhaps they did give her the shot and that would go along with the time frame you mentioned.
I beleive she will see someone at pallative care again tomorrow to check her out again. No results yet from the cat scan on the 3rd of Oct...I think they are waiting until her oncologist can review it again on the 15th.

Reply # - October 19, 2012, 07:33 PM

marialee
Posts: 24

We saw the oncologist on the 15th...the cat scan showed a mixed response to the chemo treatments. Chemo helped shrink the lung tumours a bit but no real difference to the liver tumours and the bone mets got worse and there are 2 new tumours in the spine. They said we are just going to focus on pain management from here on.
You could tell by the look on his face that we are coming to the end.

Again, thank you all for your help in trying to figure this all out.

Maria

Reply # - October 19, 2012, 07:58 PM

Dr West
Posts: 4735

I'm sorry results weren't better, but it sounds like a good plan. I do hope that managing symptoms can help her be as comfortable as possible, even if more cancer treatment isn't likely to be effective.

-Dr. West

Reply # - November 20, 2012, 05:22 PM

marialee
Posts: 24

Hi Everyone,

Lately my MILs blood pressure has been going up and down, one day being really high and then a few days being really low. She is loosing weight again, her clothes look bigger anyway, she hasnt been weighed since chemo.
Hoping to make it through Christmas.

Maria

Reply # - November 20, 2012, 08:31 PM

catdander
Posts:

Hi Maria, I'm sincerely sorry your mother in law isn't doing well. Hoping she will improve for a good holiday season.
Janine

Reply # - January 4, 2013, 03:02 PM

marialee
Posts: 24

Well, it seems we are in a constant state of stress. Carol has had ups and downs with this cancer and in Oct as I stated they decided to focus only on pain management. We have done that and watched her slowly decline. She has lost significant weight and strength on a gradual basis but has gone from 162lbs before diagnosis to less than 100lbs now, her appetite is completly gone...she is not eating much of anything, in fact when she hadnt had a bowel movement in 4 days they did an enema and said the small amount of stool was soft and she just isnt eating enough to make much stool. Yesterday she took the whole day to drink on "Ensure" meal replacement. She has had severe confusion, vomiting and some pain the last few days so her pallative care doctor came to the house and he is almost positive the cancer has spread to the brain. She was given two doses of steroids and is to take 2 doses per day for 1 week. My husband and sister in law keep asking me if this is the end. How am I supposed to know...she is weak, she has stopped eating, she is being very nasty (this isnt new, but she usually tries to sugar coat the insults, not any more). The doctor mentioned to her that they may do some radiation but then later told me (through a nurse) that she is too weak to have that done. We are just so overwhelmed, and then today my FIL had pain in his chest going down his arm...the VON nurse called to tell me but then said he seemed fine now so it wasnt an emergency. Still I was so scarred, knowing my husband is loosing his mom and the thought that his dad might have a heart attack...oh my. We have been dealing with his advancing Alzheimers for years now. They are doing a CT scan on Monday or Tuesday on my MIL to confirm the brain mets.

So sorry to ramble but I am looking for any advice on what we should expect at this point. I know everyone is different, she has reacted to treatments so much better then expected...should we expect this to be the same?

Reply # - January 4, 2013, 05:58 PM

laya d.
Posts: 714

Hi marialee. . .

I just wanted to say that I am so sorry you all are going through this awful time. . .Hang in there. . .

Laya

Reply # - January 4, 2013, 09:51 PM

Dr West
Posts: 4735

I'm afraid that it sounds to me like she's experiencing the pattern of what tends to happen as the cancer advances. In this setting, things aren't likely to turn around with further treatment, and I also agree that it sounds like she's so debilitated that she might not be able to receive much (if any) meaningful treatment at this point.

I'm very sorry to hear of how much she has declined.

-Dr. West

Reply # - January 5, 2013, 08:39 AM

marialee
Posts: 24

Thank you both for your comments. It seemed we have prepared ourselves for the end with her many times and she has always turned around and surprised them. I spoke with my sister in law last night and just told her all the changes. I told her she had to decide herself if she needed to come home. It is very expensive for her to visit, she lives across the country and flights are expensive. I suggested that she just wait and see and I would try to give her as much notice as possible. I think she wants to be there when her mother passes but I dont think this is realistic. The doctors said she could take a seizure and that may be the end, they also said she may go weeks like this.
I am just going to take it one day at a time and try to be as supportive as I can to my husband and sister in law.

Thank you again for all of the information and opinions you have given. It is nice to be able to get an opinion from people who have seen these diseases and what they do.

Maria

Reply # - January 5, 2013, 11:25 AM

drpietanza
Posts: 7

Hi Maria,

Sorry to hear about your mother-in-law. As Dr. West states, these signs and symptoms she is displaying are consistent with end stage disease. Regarding the nasty comments, it may just be the steroids as they make patients very moody. You may want to reconsider the CT scan of the brain, it may not be necessary if they are not planning on doing radiation therapy anyway, given that she is so weak. I don't recommend brain radiation therapy in patients who are so weak, as it is not likely to help, and may make things worse.

It seems that you are doing the very best possible at this point.

Best,
Cathy

Reply # - January 5, 2013, 10:51 PM

laya d.
Posts: 714

I have learned that knowing just when to call in loved ones before someone passes is a very tricky and subjective thing. My Mom was very adamant about not wanting to say goodbye to her loved ones. She said she didn't want to know if this would be the last time she would see this person or that person or not. She believed that it would cause her a great deal of stress to do final goodbyes (and she did not want to spend her last days visiting with loved ones for the purpose of final goodbyes). So, we (my Dad, husband and I) followed her wishes and did not share the gravity of the situation with most of our loved ones (the immediate family, of course, knew). After the fact, however, a few close relatives and friends were saddened and haunted by the fact that - - for example - - they weren't around for the last 24-48 hours. I, of course, apologized and told them that my Mom did not want any goodbyes and that what needed to be said already had been said between them. They each told me that they understood and that it was OK - - but I know that they were greatly bothered by the fact that they had not "been there." Again, it's very tricky...

Laya

Reply # - January 11, 2013, 10:16 PM

marialee
Posts: 24

Thank you all. You understanding and comments are helpful in dealing with this. I appreciate all advice, we need it. We had the CT Tuesday morning & they called back about a half hour after we got home, they told us they needed to admit her. The doctor showed my husband & I the scan and it was so unbelievable. She has a very large tumour at the base of her head on the brain stem and he said this could cause a "seriuos event" that would cause her to pass suddenly. By comparing the size of the tumour to the brain on the screen I would say it is about the size of a tennis ball. She has two others in different areas of the brain about the size of quarters and one about the size of a walnut. Nearly all quadrants of the brain have a tumour. She also has many small specks that he said looked like new tumours beggining. He is keeping her in pallitive care but has requested a family meeting with him on Monday to discuss her being discharged. She can not stand up without assisstance, she is nauseus and vommiting, having major bowel issues, not eating much, VERY confused, and VERY agitated. She seems to have focused her attention to the fact that my father in law is still staying at home when she had to be admitted to hospital. For years we all thought he would have to be hospitalized for his alzhiemers and she seems very angry that he is not as sick as she is now. I know that seems weird to say but she keeps saying "why do I have to be here if you are keeping him at home?". It is so hard, my father in law is cross at her because she told him she was going to make sure he was put in a home if she had to go. He wouldnt call or visit since Tuesday when she said this and then got admitted. he agreed to go with us tomorrow.
My main concern is...if she comes home, what would this "serious event" be? Would it be quick? would we have to watch her panic as she died? My SIL said she may bleed from everywhere. We could not handle that on our own.We are barely hanging on as is

Reply # - January 11, 2013, 10:18 PM

marialee
Posts: 24

Laya, I am so sorry to hear about your mom. My husband is holding on by a thread, which I think is going to break. He cant handle much more.

Maria

Reply # - January 11, 2013, 10:40 PM

laya d.
Posts: 714

Oh Maria --

I'm so sorry to be reading all of this. And, I defintitely can relate to your husband.

I can only offer and speak of my own personal experinece with this. I can tell you that very shortly after my Mom passed (like within 2 or 3 days), my "always present" anxiousness, anxiety, stress and nervousness - - all of which had begun on the day of my Mom's diagnosis three years earlier - - almost totally disappeared. No more racing heart, no more insomnia, no more sour feeling in the pit of my stomach. Obviously, my worst fear had become a reality - - and, therefore, in a way, I guess I didn't have to worry about my Mom dying anymore. She had died. But, what I was left with - - which was completely different than before - - was a profound and enormous sense of sadness (which weighs incredibly heavy), and a very basic/primal and almost child-like yearning for my Mom. I have to believe that this will get better as the months and years go by. That I will learn to live a "new normal" without my Mom.

Every person is different and every relationship is different. So, I don't mean to impute what has happened to me onto you or your husband.

For now, all I can do is wish for you to have Herculean strength in spirit and peace.

All my best,
Laya

Reply # - January 12, 2013, 05:27 PM

marialee
Posts: 24

I am wondering if someone could tell me what to expect with the "serious event" that the pallative care doctor said could quickly take her life at any time? My husband and I have to talk about it because they are wanting us to make a decissions for Monday on what the next step in her care will be. She wants to come back home but really can we handle seeing this "event"? Would she just pass quickly? I really am trying not to be morbid but I need to know what I would be getting into if we take her home again.

Thank you,
Maria

Reply # - January 12, 2013, 06:32 PM

Dr West
Posts: 4735

I'm sorry you're facing this situation. The true best answer is "anything", but most likely it would be a seizure or just sudden death. As things get more complicated, it gets hard to predict what might happen. I think it's helpful to avoid postponing any big decisions, because something could happen at pretty much any time.

-Dr. West

Reply # - January 12, 2013, 06:43 PM

marialee
Posts: 24

thank you Dr. West. We have called most of the family so they can prepare, if they have not already for the hard phone calls we will have to make.
It is such scary thing because neither of us has been around too many people in this situation. My husband had both of his grandparents die from lung cancer but we were not the primary care givers so we did not have to be there to see the end. We do not know what to expect. I have read many of your threads and they are helpful.
Maria

Reply # - February 6, 2013, 05:59 PM

marialee
Posts: 24

Hello again,

It has been a very hectic month as things have progressed. She is in a state now where she is really not there anymore. Most times she knows us when we visit but she crys constantly (today was the first time she wasnt unconsolable). She thinks she is in the hospital because she had a baby and goes from moods of being happy and excited and saying "wait until you see the baby", to saying that "something is wrong with the baby and that she needs an operation but they can't find out what is wrong with her". They did blood work to check for kidney failure and calcium but that looks ok. She is only eating a bite or two of food a day and a bit of tea. She got to a point yesterday when she was crying about her "sore" sides but when they asked if she was in pain she said no so they did not want to give her a breakthrough pain med. When I finally convinced them she was in pain the meds helped a bit.
She is no longer living, just existing, and my husband and sister-in-law are now saying they wish she would just pass peacefully so she did not have to suffer any more.

How long can someone go on with this stage of dementia from the brain mets...the doctors here say that it is obviously the tumours because her blood work is ok. The suspect the "specks" that were there before have grown? They have her on a floor where they have to go to wait for a nursing home, we hope they will have a bed for her back in pallative care soon. There are only 6 beds so only the most critical get them when they need them.

I know you can only give me your opinions but so far the information you shared has helped us prepare.

Thank you.
Maria

Reply # - February 6, 2013, 09:32 PM

Dr West
Posts: 4735

I'm sorry for what's happening. If brain mets aren't being treated, most patients have a survival limited to weeks. In truth, having this kind of delirium is actually unusual for brain metastases, so it's not easy to say what to expect.

I wish I could offer a better answer, but it's hard to say much without being involved and having all of the details, and I'm not sure it would be possible to say much more even if I were directly involved.

-Dr. West

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