Wife Just Diagnosed w/ ES SCLC - What Can We Expect?

Posted by rlogan @rlogan, Feb 19, 2022

My wife received the following diagnosis yesterday: Primary malignant neoplasm of lung, secondary malignant neoplasm of liver, secondary malignant neoplasm of vertebral column. Four months ago she had a chest x-ray performed and no anomalies were noted.

We have surmised that this is likely Extensive Stage Small Cell Lung Cancer.

She has been referred to a local oncologist and a PET-CT scan has been ordered by our doctor.

Last evening we requested an appointment at the Mayo Clinic - Jacksonville at the suggestion of a friend.

Can anyone tell us what we can expect over the next few days/weeks/months?

Interested in more discussions like this? Go to the Lung Cancer Support Group.

@rlogan

Merry, I have steered away from cannabidiol due drug testing at my place of work. I understand that many products do not contain THC, the potential risk outweighs the potential benefits for me at this time.

Liz has lost too much weight for her size and it has made her weaker by far. She has started eating some solid food or drinking a protein shake at least 3 times a day. Too early to see any real difference, but she is feeling better lately.

She has her second chemo treatment in another 9 days and I expect her to repeat the vomiting for the rest of that chemo week and slowly get better over the following two weeks until her 3rd treatment. At least we know what to expect and may be able to handle it a little better.

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Hi Bob- One of the things that I feared most prior to having chemo were the side effects. I spoke to a nurse, who I knew, who was a nurse in the chemo lab, and said to get an anti-nausea med. and take it the night before chemo and then after you get home and then as much as you needed it until it goes away. I did this and never vomited. Yes I lost weight but I'm petite and I could lose only so much before I was truly in danger.

If her oncologist won't give her extra meds then ask her pcp. One of her doctors needs to pay attention to this, enough to help her.

I understand about being careful with drug tests. My husband was a US Commissioner for fisheries in another country. But you do have to unstress.
https://connect.mayoclinic.org/group/caregivers/
Perhaps talk to your PCP or check out the caregiver group- aren't you on it?

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@merpreb

Hi Bob- One of the things that I feared most prior to having chemo were the side effects. I spoke to a nurse, who I knew, who was a nurse in the chemo lab, and said to get an anti-nausea med. and take it the night before chemo and then after you get home and then as much as you needed it until it goes away. I did this and never vomited. Yes I lost weight but I'm petite and I could lose only so much before I was truly in danger.

If her oncologist won't give her extra meds then ask her pcp. One of her doctors needs to pay attention to this, enough to help her.

I understand about being careful with drug tests. My husband was a US Commissioner for fisheries in another country. But you do have to unstress.
https://connect.mayoclinic.org/group/caregivers/
Perhaps talk to your PCP or check out the caregiver group- aren't you on it?

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She was taking anti-nausea meds, but they were not effective for her. Her PCP prescribed them but limited her to 1 tablet twice a day and she probably needed them more often. I will mention this to the Oncologist when we see him Tuesday. He will be going over the pelvic x-rays she had earlier this week.
I am not on the caregiver group and will look into joining it. Thanks!!
She has not had a bowel movement for over a week now again, despite the OTC stool softener - laxative she is taking (Docusate Sodium/Sennosides) so we tried a suppository with poor results. She was still unable to have a bowel movement, but began leaking and we had to put her in adult diapers. If she does not have a movement by tomorrow, we will be visiting the ER again to see if they can do anything to get things moving......

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@rlogan

She was taking anti-nausea meds, but they were not effective for her. Her PCP prescribed them but limited her to 1 tablet twice a day and she probably needed them more often. I will mention this to the Oncologist when we see him Tuesday. He will be going over the pelvic x-rays she had earlier this week.
I am not on the caregiver group and will look into joining it. Thanks!!
She has not had a bowel movement for over a week now again, despite the OTC stool softener - laxative she is taking (Docusate Sodium/Sennosides) so we tried a suppository with poor results. She was still unable to have a bowel movement, but began leaking and we had to put her in adult diapers. If she does not have a movement by tomorrow, we will be visiting the ER again to see if they can do anything to get things moving......

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The anti nausea pills tend to cause constipation and it is very important to address asap to prevent blockage and hospitalization.....Have you tried the ducolax suppositories? They can cause serious cramping on left side but they could be effective.

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Have any of you tried Linzess? How have you done with it? It cleaned me out but I felt dreadful so switched back to the senna tablets....

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@dedehans

The anti nausea pills tend to cause constipation and it is very important to address asap to prevent blockage and hospitalization.....Have you tried the ducolax suppositories? They can cause serious cramping on left side but they could be effective.

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Dede - We tried a suppository yesterday late-morning and she started leaking fluid around 5:00 pm but could not evacuate her bowels. I put her in adult diapers for the evening and overnight the suppository fully did its job - she woke up with a "full diaper".

She has been coughing on and off for the past few days trying to clear her throat and it was more severe this morning. She complained of having difficulty breathing so she was taken to the hospital again by ambulance. After a few tests and x-rays, they told us that her right lung was nearly filled with fluid and her red blood and platelet counts were seriously low due to the chemo she had received last week. They gave her a unit of blood and a couple bags of platelets to correct the anemia issue and will be draining the fluid from her lung tomorrow morning.

We will be seeing the Oncologist Tuesday afternoon for her hip x-ray results (assuming she is released from the hospital tomorrow or Tuesday morning) and we will discuss her episode today with him. Clearly they will have to reduce the chemo drugs strength for her second treatment next week.

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@rlogan

Dede - We tried a suppository yesterday late-morning and she started leaking fluid around 5:00 pm but could not evacuate her bowels. I put her in adult diapers for the evening and overnight the suppository fully did its job - she woke up with a "full diaper".

She has been coughing on and off for the past few days trying to clear her throat and it was more severe this morning. She complained of having difficulty breathing so she was taken to the hospital again by ambulance. After a few tests and x-rays, they told us that her right lung was nearly filled with fluid and her red blood and platelet counts were seriously low due to the chemo she had received last week. They gave her a unit of blood and a couple bags of platelets to correct the anemia issue and will be draining the fluid from her lung tomorrow morning.

We will be seeing the Oncologist Tuesday afternoon for her hip x-ray results (assuming she is released from the hospital tomorrow or Tuesday morning) and we will discuss her episode today with him. Clearly they will have to reduce the chemo drugs strength for her second treatment next week.

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I am glad she had full diaper as you say as bowel blockage is to be avoided. I hope the transfusion helps get her red blood cells and platelets back up for future plans.
Where is she having the lung drained? Hospital? Pulmonary doctor?
You both are in our thoughts and prayers. Let us know how it goes tomorrow and Tuesday after seeing the oncologist. I need refresh....pulmonary oncologist?

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@dedehans

I am glad she had full diaper as you say as bowel blockage is to be avoided. I hope the transfusion helps get her red blood cells and platelets back up for future plans.
Where is she having the lung drained? Hospital? Pulmonary doctor?
You both are in our thoughts and prayers. Let us know how it goes tomorrow and Tuesday after seeing the oncologist. I need refresh....pulmonary oncologist?

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Dede, she is in the hospital and they will drain her lung there. Her pulmonologist will perform the procedure there in the morning.

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@dedehans

The anti nausea pills tend to cause constipation and it is very important to address asap to prevent blockage and hospitalization.....Have you tried the ducolax suppositories? They can cause serious cramping on left side but they could be effective.

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Dee- I have taken those before but never experienced any particular side that was uncomfortable. I think that with things like this we each feel them differently. Dulcolax is used in preps for colonoscopies a lot.

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@rlogan

Dede - We tried a suppository yesterday late-morning and she started leaking fluid around 5:00 pm but could not evacuate her bowels. I put her in adult diapers for the evening and overnight the suppository fully did its job - she woke up with a "full diaper".

She has been coughing on and off for the past few days trying to clear her throat and it was more severe this morning. She complained of having difficulty breathing so she was taken to the hospital again by ambulance. After a few tests and x-rays, they told us that her right lung was nearly filled with fluid and her red blood and platelet counts were seriously low due to the chemo she had received last week. They gave her a unit of blood and a couple bags of platelets to correct the anemia issue and will be draining the fluid from her lung tomorrow morning.

We will be seeing the Oncologist Tuesday afternoon for her hip x-ray results (assuming she is released from the hospital tomorrow or Tuesday morning) and we will discuss her episode today with him. Clearly they will have to reduce the chemo drugs strength for her second treatment next week.

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Bob- Things are just never easy with cancer. Poor Liz, all these side effects from chemo and probably cancer too. I'm very glad that she was able to empty herself out. I think that because of her lack of interest in food and not eating much bunny food it will be very hard for her to have regular BM's. Also, Dee brought up a good point about anti-nausea meds. There seems to always be a trade-off.

The best of luck today. Was Liz discharged from the hospital?

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@merpreb

Bob- Things are just never easy with cancer. Poor Liz, all these side effects from chemo and probably cancer too. I'm very glad that she was able to empty herself out. I think that because of her lack of interest in food and not eating much bunny food it will be very hard for her to have regular BM's. Also, Dee brought up a good point about anti-nausea meds. There seems to always be a trade-off.

The best of luck today. Was Liz discharged from the hospital?

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Merry, they drained about 1 qt. of fluid from her lungs but the follow up x ray showed there was still something in her lower left lobe. They will be sending a scope into her left lung today to see if it is just phlegm, which they can suck out, or if the cancer has grown/spread to the area. If it is cancer that would mean that the chemo has been ineffective inhibiting the spread. Liz is resting better and hopefully things will go well today.

On a positive note, her pelvic x ray showed that there was no structural damage to her pelvic bones and there were only two very small areas of cancer on her femur which should be easily treatable when she gets through this sequence of chemo.

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