Spinal tap is Thursday

[Pancake_Lefse]

We met with oncology this morning and as I suspected, we didn’t really learn much more.

They plan to do the spinal tap Thursday. Pending those results, they’ll make a plan.

Brain radiation is off the table also pending spinal tap results. Should the cancer be in sheath/spine, they do not feel brain radiation will be of benefit.

Jeff continues to have low O2 sats, however, they think perhaps he’s over sedated. They want his pain managed, but they only want him taking the oxy when it’s absolutely necessary.

His nose is still bleeding and he’s still expelling rather large blood clots. His platelets are a little low which may be contributing to the bleed, additionally, being on oxygen dries everything out. They are giving him a spray and saline to help combat this.

Speech therapy was in. He struggled with memory, but did well on math. His process time is prolonged, but he generally answered correctly. At times he said something that didn’t make sense or apply to the question, but again, he eventually got to the correct answer.

The therapist asked him the date and he said, “21 .. 21 Jump Street!” Admittedly, we all laughed, it was even funnier when he said, “aww man, what the hell am I saying?!” He immediately knew that wasn’t the correct response and ultimately said June 21st.

Obviously he’ll be in the hospital until Thursday for spinal tab, beyond that, they are uncertain as he remains so very weak and lethargic. They would like to see him move around a little better and be more alert.

They reminded us that the social worker would be by to discuss hospice. I very briefly detailed our office visit with a social worker and explained we were given no resources.

I asked that they review home health care this afternoon.

Although Jeff would very much like to go home, he understands they aren’t quite ready to discharge him.

#teamjeffgallagher

~ Stephanie

[Seasid]

What are his low O2 saturation levels? My ex wife father has a lung cancer and he is in hospice now in Zagreb, Croatia and his O2 levels are 87%. He is also probably over sedated (they call it making them comfortable) i myself would have problems with the tests not when someone is over sedated. I can understand the situation. My ex wife is going through this now with her father.

[Pancake_Lefse in reply to Seasid]

When they drop, it’s usually low to high 80’s.

They drop lower and more frequently when he’s sleeping. If we rouse him and get him to take deep breaths, it quickly goes back to the 90’s.

He is still sleeping a great deal, so the alarm is constantly sounding.

[Seasid in reply to Pancake_Lefse]

Could the straight Resmed CPAP machine help during the night sleep? I am using one with 9.6cm water pressure setting? If you are sedated your airways are relaxed and collapsing and you are experiencing Apneas? I am diagnosed with sleep apnea. Without the machine my oxigen levels could drop occasionally to 84%. Does he stop breathing? You could have central or/and obstructive Apneas. The software would tell you how many Apneas are central Apneas. You could also consult an airways specialist and he could prescribe him a CPAP machine. I had an overnight sleep study in a hospital in order to be diagnosed. You could observe him while he is sleeping as a first step.

[Pancake_Lefse in reply to Seasid]

No history or symptoms of sleep apnea, especially now that he has lost so much weight.

They asked about sleep apnea at hospital, but there are no visible signs he stops breathing. He doesn’t snore, no gasping …

[Seasid in reply to Pancake_Lefse]

Just to inform you about hospice rules in USA. (Probably it is the same everywhere else.) I posted about my ex wife father in a hospice etc. And one American lady replayed with the following useful information about why my ex wife father don't get even a blood transfusion.... Here is her reply (You can find the whole post about my ex wife father situation in my profile):

My ex wife father can't get a biopsy nececery to get Keytruda as oxygen levels 87%.

Seasid profile image

Seasid

19 days ago•2 Replies

My ex wife father 89 years of age has a metastatic lung cancer. Since short time ago he is in a hospice (paliative care). He is in Zagreb Croatia. His oxygen saturation level is 87%. (They can't rise his oxygen levels with supplemental oxygen.) The doctors can't perform bronchoscopy and can't get a biopsy nececery to get Keytruda. He is heavily sedated and probably comfortable. My ex wife is in Switzerland in Zürich and I am in Sydney so we can't help him. My ex wife tryed to communicate with the Croatian doctors in Zagreb but it failed. So she gave up. What would you do in this situation? I sugasted liquid biopsy but we are not sure if it is enough to get Keytruda in Croatia. We had the idea maybe to get a biopsy from the lung metastasis in an other organ. Unfortunately the doctor don't reply so we are in the dark. What would you suggest in such a situation? I would like to understand why can't they rise his oxygen levels with supplemental oxygen? Any idea?

2 Replies

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Denzie profile imageDenzieModerator

17 days ago

Very sorry that your former father in law is doing so poorly. The only thing I can think of is that he may not have enough red blood cells to carry the oxygen to his body needs. I needed a transfusion of blood before I could begin treatment for my cancer.

A liquid biopsy should be able to tell you if he qualifies for Keytruda.

Jenniferroseolson profile imageJenniferroseolson

16 days ago

I am very sorry to hear this. In the US, palliative care and hospice care often occur within the same medical department but have differing goals/actions. They are not the same thing. Here, if someone is receiving hospice care, he must sign an agreement that indicates that life-saving treatments will not be continued at that point and the focus becomes comfort. If he is receiving palliative care, then professionals work to help him live a better quality with the side effects of treatment while the patient at the same time is receiving chemotherapy or immunotherapy or other efforts to cure the cancer. That seems a bit off topic for your question, but my thinking is this: if he is already on hospice care, he may not be able to seek a curative treatment unless he discontinues his hospice agreement. Best wishes for you all in understanding how best to help him.Jennifer

[j-o-h-n in reply to Seasid]

To Seasid,

Keytruda works on the lungs!!!

Good Luck, Good Health and Good Humor

j-o-h-n Wednesday 06/22/2022 6:45 PM DST

[Seasid in reply to j-o-h-n]

We know that, but you need a biopsy except if you have a melanoma. Than you don't really need a biopsy for keytruda.

[j-o-h-n in reply to Seasid]

I had a biopsy of my lungs... to confirm that it was CA......(I guess MSK 's Real Estate taxes were due)....

Good Luck, Good Health and Good Humor

j-o-h-n Wednesday 06/22/2022 11:07 PM DST

[Seasid in reply to j-o-h-n]

How long did it take after your skin melanoma was first diagnosed to notice a spread to your lungs?

[j-o-h-n in reply to Seasid]

To Seasid,

To answer your inquiry regarding my melanoma.

03/04/2015 Identified Melanoma on neck.

03/30/2015 Removed Melanoma.

12/01/2016 Discovered Metastasized to left lung.

02/07/2017 Began Keytruda therapy (Every 3 weeks).

01/10/2018 Last treatment (number 16).

All performed at MSKcc. No side effects…

Need additional info let me know (There will be a slight charge for that info)...

Good Luck, Good Health and Good Humor

j-o-h-n Thursday 06/23/2022 1:07 PM DST

[Seasid in reply to j-o-h-n]

It took them a long time to start with te correct (Keytruda) therapy.

[j-o-h-n in reply to Seasid]

The reason for that it had to be biopsied first and then a surgeon was going to remove part of my lung. Fortunately they mention immunotherapy and Keytruda and I said ok and they got the wheels rolling.... In 2016 Keytruda/immunotherapy was rather a new therapy.It also took some time to take my picture for s.NOBs movie star magazine....

Good Luck, Good Health and Good Humor

j-o-h-n Thursday 06/23/2022 6:29 PM DST

[Seasid in reply to j-o-h-n]

Thanks. Your clear thinking is approciated. I already past this information further.

[j-o-h-n in reply to Seasid]

Wow, I guess I can considerate that a compliment to an 85 year old geezer.......🤡

Good Luck, Good Health and Good Humor

j-o-h-n Wednesday 06/22/2022 11:11 PM DST

[Seasid in reply to j-o-h-n]

It is well known that people with a sense of humor are intelligent.

[Faith1111 in reply to Seasid]

Great suggestion

[Hidden]

Thanks to the team , stay strong steph! He is walking a tight rope ! Thank God ! that he is being well cared for? Prayers 🙏💔

[Metaldraft]

My everlasting prayers and continued hope for you You are incredibly spirited thanks for being there