Low point

[Sallysh]

It’s been a while since I’ve posted. I have a squamous cell non-small cell lung cancer went through the original treatments got to the dervalumab and had two roundsit. The cancer began progressing so we changed from that to Gemcitabine. up to this point I have tolerated the side effects pretty darn well, unfortunately every time I have a scan some thing has progressed and then something has improved so it’s very confusing. I just had two rounds of SBRT for ogliometastatic  lesion on my liver and my spleen   Two days later I started on Taxotere Cyramza andNeulasta   had my usual two days of feeling poorly but yesterday felt better until I got very very tired and I decided to take a shower. Long story short I I passed out in the shower thankfully I have grab bars and I really good husband. basically I slept the rest of the day and night , I’m also having some brown phlegm not much but I find myself terrified which has not been the case so far. I know the next step is a clinical trial, but if I’m passing out, I probably won’t qualify. I just need a little support. My husband is great but he can’t discuss these things  And I have no more family left except nieces. anyway I just was hoping someone had had this same type of experience. The lightheadedness is different than what I’ve had before and very serious in my mind today it is better I’m just being very careful anyway just wanted to throw that out there any words of wisdom would help .   Thanks. 

[LouT]

Sally,

I'm sorry to hear about what you are going through.  I have not had that much experience with any form of chemo/antibody or other treatments so I can't offer any real counsel on them.  One thing I can say is that you may want to add a palliative care person to your treatment team.  Their job is to monitor treatment and side-effects and work with the patient and doctor to reduce the impact of negative side-effects as a result of treatment.  Please know that you are in my thoughts and prayers to get through this with as little discomfort as possible.

Lou

[tgif i guess]

i am not wise but can offer my early experience on passing out.

my first visit with my oncologist, he sent me to a local lab for blood tests.  i went directly to the lab and had 2 vials drawn.  no big deal.

the drive home was short and took me past the oncology clinic.  while at a stop light i began to feel odd.  i decided to cross the intersection and then stop at the clinic.  i recall the light turned green but woke up after hitting a light pole.  ambulance came and took me to the er.  they had started an iv in the ambulance.  that seemed to be the problem.  dehydration.

broke my wrist in the accident and needed surgery.  the oncologist, ortho and general surgeon asked if i wanted to delay chemo after surgery.  i said no and they agreed.  general surgeon put in my port and ortho took over and did my wrist at the same time.  all were interested in the healing process, which was slowed but it did heal.

for decades i rarely drank water.  i swilled about 6 liters of tab (then diet coke when tab was discontinued) daily.  when i woke in the wrecked car, i poured out the diet coke in the cupholder and now only drink water.  i have not had a problem passing out since.

might not be the answer to your problem but hydration is important.

might keep a check on your blood pressure too.

i understand what you are saying about talking to others.  i get my chemo in a setting with others in the same room.  what you can say to someone in the same boat is different than what is possible with others.  and what they can say to you.  don't feel bad about posting here.  we probably have the same thoughts.

 

[Tom Galli]

Sally,

Oh my, you've had a hard row to hoe!

When my phlegm turns dark, my medical oncologist tells me to start Levaquin antibiotics and seek a physician appointment pronto. Dark phlegm is an indication of infection and it could be viral or bacterial. The Levaquin addresses the latter. An infection could also explain your passing out. Even a mild infection, given your chemotherapy, will cause extreme weakness.

I'd see your GP and report these symptoms.

Stay the course.

Tom 

[Sallysh]

On 1/9/2024 at 11:45 AM, tgif i guess said:

i am not wise but can offer my early experience on passing out.

my first visit with my oncologist, he sent me to a local lab for blood tests.  i went directly to the lab and had 2 vials drawn.  no big deal.

the drive home was short and took me past the oncology clinic.  while at a stop light i began to feel odd.  i decided to cross the intersection and then stop at the clinic.  i recall the light turned green but woke up after hitting a light pole.  ambulance came and took me to the er.  they had started an iv in the ambulance.  that seemed to be the problem.  dehydration.

broke my wrist in the accident and needed surgery.  the oncologist, ortho and general surgeon asked if i wanted to delay chemo after surgery.  i said no and they agreed.  general surgeon put in my port and ortho took over and did my wrist at the same time.  all were interested in the healing process, which was slowed but it did heal.

for decades i rarely drank water.  i swilled about 6 liters of tab (then diet coke when tab was discontinued) daily.  when i woke in the wrecked car, i poured out the diet coke in the cupholder and now only drink water.  i have not had a problem passing out since.

might not be the answer to your problem but hydration is important.

might keep a check on your blood pressure too.

i understand what you are saying about talking to others.  i get my chemo in a setting with others in the same room.  what you can say to someone in the same boat is different than what is possible with others.  and what they can say to you.  don't feel bad about posting here.  we probably have the same thoughts.

 

 

[Sallysh]

Thanks,    The blood pressure thing might be a possibility for me.  My bp is always low.  Having lived in AZ. for 40 years I’m pretty good about hydration.  It’s almost a week and I’m usually feeling better by now.  Oh well, one step ahead.  

[BridgetO]

You've been through a lot!  I've never had an issue with passing out, but once I was woozy from a gastrointestinal virus and probable dehydratiion and fell getting out of bed and clonked my head on the nightstand, not injured but it was very upsetting. I can't imagine how scary it must have been finding you had passed out while driving.

If you want an additional source of support, Lungevity has a couple of programs that might interest you. One is a Lung Cancer Help Line, where you can talk to an oncology social worker.  The phone number for that is 844-360-5864. The other is peer-to-peer support. You can find out about both of these  on the main Lungevity website, Lungevity.com.  I know how important it is to have someone to talk to, and sometimes it needs to be someone other than family. I've used the Cancer Counseling Center at the hospital where I've received my treatment and found them really helpful. 

Hang in there, and I hope you can find the support you need. We're always here for you, too.

[TJM]

Sorry I missed this string. I too have been having problems with passing out or nearly passing out and I am not on treatment. I had a theory that since I gained a ton of weight during/after treatment and have lost all of it over the past year (50 lbs) that maybe some of the Chemo drugs were "stored" in all that fat I gained then lost. Engineers think of the darndest things!

After doing a ton of blood work and labs one of the  care givers at KP decided it was a combination of a low sodium level (it was low) and a severe vitamin D2 deficiency. Told me to use more salt and gave me some potent D2 pills ( take one a week for 8 weeks).

I have serious doubts. Two things a Scotsman has is one, never an issue with too little salt and two a heriditary lack of vitamin D2!

My appetite sucks and I have found that if I do not eat regularly I have to "hug the wall" every time I stand up. My primary told me to stand up more slowly. LOL.

I cannot wait for my next scan. Which they will not move up. I am torn between feeling like a paranoid hypochondriac and a building concern of some kind of recurrence. When did I become so hesitant?

Hope this helps a bit

Tom

Edit: I also have low BP and have had it for awhile. Been as low as 95/45. Again my primary thinks increased sodium will help that. So I have increased my intake of potato chips!