husbands update

[bes]

It seems that after each Keytruda treatment he is having a harder time he just finished a round of antibiotics for an infection he still does not feel well. Called dr. today and they will not prescribe a different antibiotic they want to wait for ct test to be done next Monday. He told me that this time he has no energy at all--Me the worrywart is hoping this is not a sign the Keytruda has stopped working; I wondering if the inflammation they saw on the last ct scan was the cancer progressing--I don't know and despite having a good appetite and his weight being steady he has lost 3lbs this week.  So hoping this is just a bump in the road.

 

[Steff]

bes,

How is your husband not feeling well, what symptoms is he having? What type of infection does he have?

[bes]

fatigue, coughing up thick green phlegm no fever and more difficulty breathing along with chest pain.  We went to Cardiologist this past Friday and was told it was not his heart it was his lungs.  He was given 875mg Augmentin 2x day for his infection--they didn't test what kind-- this is the 2nd infection since June and he is also on prednisone pack. Medication was prescribed by his Oncologist.  If he happens to get worse we will just go to ER.

 

[LexieCat]

I'm so sorry, bes,

This sounds very scary and frustrating for both of you.  I hope the next visit to the oncologist is more encouraging.

Just sending a hug.

[Steff]

bes,

My mom was full of infection and had pneumonia in the middle of her chemo treatments. She was in the hospital for 2 weeks dealing with it and struggled for about a month afterward.  It took awhile, but antibiotics really helped, as well as, low dose steroids.  My mom's pulmonologist and primary doc were the ones to deal with the infection, not the oncologist.  If he is still struggling, perhaps contacting his pulmonologist or primary doc would be helpful.

[Laurel]

After my first chemotherapy in April, my husband and I fought through 5 weeks of pneumonia....struggling to breath...to move. My oncologist prescribed first antibiotics with no improvement.. I, then, put infection care in to my primary doctor's care. I had another round of antibiotics and finally a stronger antibiotics with z pack to knock it out.  3 other chemotherapies completed with no or very low infection.

[Tom Galli]

Bes,

If it is any help, I often suffer these chest congestion episodes, especially this year. Although my doctors almost always issue antibiotics, my symptoms likely result from virus or seasonal pollen. 

Here are some practical ways I deal with congestion. Have your doctor prescribe a “rescue inhaler”. Mine is Combivant but there are many flavors and strengths. I turn my shower on full hot and generate lots of steam. Then I use the inhaler and stand or sit in the shower for 10 to 15 minutes of course careful to avoid the scalding water. This generally leads to very productive coughing that lets me feel better. 

I do this sometimes 3 or 4 times per day and find the steam very soothing. 

Stay the course. 

Tom

[Laurel]

I agree with Tom. Hot showers/ steam helps. I also use cold air humidifier. My doctor asked that I take Allegra and Flonase nose spray for allergies.

[bes]

Thanks for the replies my husband uses an inhaler plus rescue inhaler too. He is also on a nebulizer twice a day and Flonase as needed. Today he feels no better a respiratory therapist was at our home yesterday setting up an noninvasive ventilator for my husband she checked his lungs and said she heard no wheezing or crackles --so of course my mind thinks cancer has returned what else could it be.  He was pain free for months until this week and the pain is in the same place as first diagnosed. Could it be side effects from the radiation he had in November?  He has a CT on Monday and follow-up on Tuesday with Oncologist and another Keytruda treatment-I don't know if he can tolerate another treatment.

 

[Tom Galli]

Bes,

Pain could be a lot of things or nothing. Scans will tell the story. I understand how difficult Keytruda can be for some but if it is working, it is far better than the alternative. 

Stay the course. 

Tom

[bes]

Thanks Tom we got the results of the CT scan yesterday It states some things are stable one other has decreased but one area has increased substantially states it is a necrotic masslike opacity compatible with worsening neoplastic disease--This is the same area the Dr told us last time was inflammation-my guess is it wasn't. He has bloodwork today and oncologist appointment. I will be very surprised if he suggest continuing Keytruda. 

[bes]

 Dr visit was slightly encouraging yesterday bloodwork was stable and other nodules were stable.  He told us the tumor has doubled in size and that it was almost gone. he doesn't know if it's the Keytruda not working or the fact that my husband was on several rounds of prednisone since early April--there was inflammation the end of May or growth and of the course the latest yesterday that it had doubled. He is telling us to stay the course for the next rounds of treatment and we will see at next ct scan in Sept if there is any change--he is hoping that Keytruda kicks in again --if it is growing we will discuss quality of life vs chemo.

[LexieCat]

Let's keep rooting for the Keytruda--sending good thoughts your way!

[Steff]

bes,

Can the doctor definitely  rule out inflammation? The area around my moms tumor doubled in size and has been that way for 9 months.  Biopsies were taken and no cancer cells were found, so we all concluded that the "growth" was most likely just inflammation.  Immunotherapy typically causes inflammation, so it's not uncommon to see.  

Another "test" we used to help us in determining whether or not it was inflammation was that my mom was feeling fine.  When her cancer was active, she didn't feel good.  Many people don't have any symptoms with lung cancer, but my mom did, so it was helpful to know what they were to apply them to this situation.  I don't know if that would correlate to your husband's situation, but I just thought I would share.  

Take Care,

Steff

[Tom Galli]

Bes,

I agree with Steff. Seems like immunotherapy always shows pseudo-enlargement around lung tumors. It is a relatively new treatment and I’ve not read any studies, but many on Keytruda report inflammation enlargement after scans. 

Stay the course. 

Tom

[bes]

5 hours ago, Steff said:

bes,

Can the doctor definitely  rule out inflammation? The area around my moms tumor doubled in size and has been that way for 9 months.  Biopsies were taken and no cancer cells were found, so we all concluded that the "growth" was most likely just inflammation.  Immunotherapy typically causes inflammation, so it's not uncommon to see.  

Another "test" we used to help us in determining whether or not it was inflammation was that my mom was feeling fine.  When her cancer was active, she didn't feel good.  Many people don't have any symptoms with lung cancer, but my mom did, so it was helpful to know what they were to apply them to this situation.  I don't know if that would correlate to your husband's situation, but I just thought I would share.  

Take Care,

Steff

Thanks Steff the scan stated the it was a necrotic masslike opacity leading the dr to suspect it might not be inflammation and my husband has not been feeling well all week on the pain meds and he had been pain free for months.

 

[Steff]

I'm sorry to hear that. I am keeping fingers crossed that next scan will provide some better news.

[LaurenH]

Hi, bes,

I'm very sorry that your husband hasn't been feeling well. I hope that his medical team can help him find relief from the side effects soon. We'll be thinking of you! Please continue to post updates and let us know if you'd like some additional information or support.

We are here for you!

With gratitude,

Lauren
--
Digital Community Manger
LUNGevity Foundation

[bes]

My husband has started taking the hydromorphone medication again his pain was a level 6 last night. This cancer pain is crazy he was a level 6 last night, level 4 this morning and this afternoon nothing and he has taken nothing but a Tylenol this morning.  It's a roller coaster hard to figure out disease; I hate it.  I keep going back and forth maybe the Keytruda has kicked in again. I'm stressed and I'm dealing with a stubborn hubby; Doesn't want to put the elastic sock back on, doesn't want to use the new non invasive ventilator and he just left to take a ride in the car by himself because he "needs space".  I feel like I'm dealing with a toddler.

[DrBee]

On 8/10/2018 at 1:31 PM, bes said:

My husband has started taking the hydromorphone medication again his pain was a level 6 last night. This cancer pain is crazy he was a level 6 last night, level 4 this morning and this afternoon nothing and he has taken nothing but a Tylenol this morning.  It's a roller coaster hard to figure out disease; I hate it.  I keep going back and forth maybe the Keytruda has kicked in again. I'm stressed and I'm dealing with a stubborn hubby; Doesn't want to put the elastic sock back on, doesn't want to use the new non invasive ventilator and he just left to take a ride in the car by himself because he "needs space".  I feel like I'm dealing with a toddler.

Oh Bes I'm so sorry....about both his pain and yours. My sweetie can be a tough nut as well, and of course he doesn't fully appreciate  realise the impact this all has on you. What if I friends who was a longtime caregiver for her partner gave me a great Mantra, comfort In, dump out" (www.psychologytoday.com/us/blog/promoting-hope-preventing-suicide/201705/ring-theory-helps-us-bring-comfort-in ). that is, we attrmpt to direct nothing but love to the patient but we must have places to "dump"  or vent, ourselves. I hope that this is proving to be a therapeutic place for you and that you have other great places to vent as well. 

[Tom Galli]

Bes,

I was a nightmare of a patient.  After mets to my remaining lung after removal of my right lung, and a years worth of surgery addressing suture failure in my airway, I became severely depressed.  I didn't tell anyone about it and hid it so well that my wife didn't see any signs.  I also tried to spend time by myself because it was a struggle to be sociable with the weight of the disease and failed treatments hanging over me. Thankfully, I mentioned it as an off-hand remark during a visit to my GP and he arranged medication and counseling.  

I was naturally stubborn and those compression socks I wore while in the hospital were truly uncomfortable.  I had one nurse put tape on the sock that was deliberately well adhered to the hair on my leg so removal would be most uncomfortable.  So the socks stayed on.  Check for signs of depression.  It is often hard for men to open up about how they feel.  I guarantee you, he's afraid, uncertain, and frustrated.  When these thoughts mount up, depression follows.

Stay the course.

Tom

[LexieCat]

I'm sorry, bes,

I've been there with partners dealing with cancer and other life-threatening conditions.  I truly get how you're feeling.  I had to take one guy's clothes out of the hospital because he kept threatening to leave--I said, "Good luck getting a cab in your hospital gown with your butt hanging out."  

DrBee is right--you need to be sure to take care of your own mental health and try not to take the behavior personally.  In part it is a "guy thing," I suspect--men aren't as socialized to ask for help when they need it.  

Just sending you a hug and support.  You're doing great under very trying circumstances.  He's probably trying to hold onto the shreds of autonomy he has when it feels like everybody is ordering him around (for his own good, of course).  

[Judy M.]

Have been on both sides. Took care of hubby with spinal tumor (turned out benign, praise God) and now I'm the patient. His personality changed significantly. We found out later part of it was a med he was on. He became really irritable. Sometimes I had to just go off and cry and pray. God was my best place to dump. Now, I'm going through the trying to judge the pain thing because it does vary so much. I thought cancer pain would be consistent and it certainly isn't. If I take too much I'll feel like I'm going to pass out. If I take too little pain will be bad and hard to get ahead of it again. It really is a Rollercoaster for the patient also. 

Judy McKay

[bes]

I agree Judy is it, today we had a meeting with the palliative care Dr. she is just so sweet and understanding it helps to talk with her.  Then I get home, hubby goes to take a nap, I go to the drug store for his new meds and the insurance company will not fill his pain prescription--I get so frustrated now a call to the Dr has to be made and I have to make another trip across state to get another prescription because the drug can not be called in because it is morphine.  So if my husband wakes up in pain he just has to wait--this is so unacceptable to me but it is what it is.  Off for another cup of coffee

[LexieCat]

I'm confused.   Did the insurance company not fill it because it was called in?  Is there any doctor who your husband sees locally who might be able to write the prescription based on a call to the palliative care doctor?  There has to be an easier way that doesn't involve your having to drive across the state.