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Wife Diagnosed w/ LS-SCLC stage 3


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Wife just completed 2nd cycle of chemo with Cisplatin + Etoposide (CE). Her day 1 of both was not good! The Cisplatin caused nausea while she was in the chair even though they had given her IV meds. Nausea has continued thru today. Constant bathroom breaks are really what she is going to remember day 1.  3000ml of fluids during the process due to the Cisplatin. Big difference from her 1st cycle in the hospital with Carboplatin. A new symptom is ringing in her ears which began after day 1 chemo. I guess Cisplatin is again the culprit. Her blood work came back with normal Na (138) which was great. However, she is still on 2000ml liquid restriction which doesn't appear to make sense. Lots of liquids are called for with Cisplatin. I will be making sure she gets all 2000ml each day.

Some issues needed to be addressed ... her blood pressure (BP) was very high day 1 and 2 before and after chemo. We just found out that her primary care doctor will have to take care of BP and nausea meds. Would have been nice to know that ahead of time, especially with meds running out and no refills.  BP was very high today also before chemo. My wife had scheduled to meet with a new primary care doctor next week who was familiar with cancer. I got her in this morning because of the high blood pressure. I think the new doc is changing to a different BP med and is changing her nausea med from Zolfran to Phenergan. I bought a BP device and have to collect data for the new doctor.

A Neulasta patch was installed on her stomach during today's chemo. This is to help restore her white blood cells. Unfortunately, it is the large bones that help with this so we were told that bone pain is common. I picked up Claritin and was told to give it twice daily for 10 days. Yep ... my wife was really tickled to have yet another symptom (NOT).

Radiation is a breeze compared to the chemo. Although just this morning she has begun feeling rough low in her throat or perhaps further down. We were warned that radiation near center of chest could cause indigestion like pain.

3rd cycle of chemo in 3 weeks ... yea! Radiation every weekday for next 4 weeks .... ugh!

Steve

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Update: just a little more confirmation of hospice as the right decision - although we have crying moments, my wife seems to feel better about things right now. She seems to smile a little more now an

Update: We met with Proton Therapy radiologist on Tuesday and were very impressed with what PT had to offer. We were there to discuss PCI and in particular HA-PCI. They could do both with PT. Unf

Thanks for sharing this, Steve. I'm sure it will be reassuring to others to know they can have some really meaningful time with their loved ones after the shift in focus to comfort care. I hope you ha

Steve,

I can only offer that I know what your wife is going through. Lung cancer sucks, chemo sucks, side effects and secondary effects suck, I wish I could wave a magic wand to ease her problems. 

Stay the course. 

Tom

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I hope she rebounds quickly from this chemo cycle.  As someone who has had radiation for a different cancer (breast), I would check to see if the techs recommend a lotion or anything of the sort for her skin.  As treatment goes on she may get some irritation at the sight.  I recommend wearing 100% cotton t-shirts or camisoles. If her target sight is near the breast consider not wearing any underwire bras.  They could also cause irritation.   She has enough to deal with, hopefully she won't have any skin issues.  

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Wife started her 2nd week of radiation. Her throat is getting sore again. It appears that throat soreness will be a week following the start of a cycle of chemo. I guess the Neulasta is starting to work since she is feeling a little bone pain. The Neulasta was just injected on Friday ... I guess it works fast making white blood cells. She has been eating a little better but her throat soreness is going to mess that up. I didn't think drinking liquids would be a problem but she is not getting up to her 2000ml restriction. Her blood pressure was way down from usual and she got a little dizzy getting up too fast. Nurse said it was a sure sign of dehydration. I gotta work on that. She has her blood drawn tomorrow. Hopefully all is well.

Steve

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Sorry to hear about your wife's side effects. I have a Udenyca (same as Neulasta) shot the day after chemo and the side effects are no fun. I feel bruised from my jaw through my torso. It doesn't hit until 2 days after the shot then lasts about 2-3 days. I hate the shot but have to have it so my white blood count is high enough to have the next chemo treatment. 

I had SBRT radiation on my lung and seemed to have no side effects until I accidentally ate pepper cheese. My throat burned for quite awhile and I didn't realize it was from the radiation until days later. All I had to do was stay away from anything spicy and I was fine. I can't imagine having the problems your wife is going through. I consider myself very lucky.

Praying she has much better days ahead.

Rose

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Update: Wife finished 2nd week of radiation. She's had a lump in her throat for a couple of days and it is extremely annoying. Also, her K, Mg, and Cl dropped to critical levels. I had to go to pharmacy to give meds Thursday night and then she had a 4 hour IV yesterday before radiation. Her blood pressure has dropped and is consistently in the 80's and 90's when it has been in the 130's and 140's since start of cancer. Her primary care doc may cut 2 x daily to 1 time daily on her high BP meds because below 90 is not good. Her throat soreness is clearing up (except for stupid lump) and she is eating well. Seems like a week after chemo is when eating gets better.

Steve

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Update: wife began 3rd week of radiation. Was supposed to get another 4 hr IV for low salts but IV on friday seems to have turned corner. Mg still low so will keep taking meds.

An important note: I have been monitoring my wife's blood pressure (BP) & pulse and blood tests results since a few days from hospital discharge. I started doing this because of the initial low Na and very high BP when she was first admitted to hospital. Salts such as Na, Mg. Cl, and Ca eventually became normal to slightly low. Her extremely high BP (180+) dropped to high (130s to 150s) presumably due to new BP meds 2 x daily. Her new "typical" BP was now 130s/80s. Lab test on 2/25/20 indicated normal for all items. This meant to me that docs had gotten everything under control. On 2/28/20 BP began dropping sharply from new "norm" into 120s and the into 90s. I told nurses of this. Her BP was taken at most visits so they had to have seen the BP drop but maybe they weren't charting it like I was. They weren't concerned so I wasn't.  A blood test was taken on 3/3/20 and we were not told until the afternoon of 3/5/20 that her salts were critically low. I didn't actually see the blood test results until they were posted online on Friday. I had just dropped off a chart of my wife's BP to her primary care doc and ask to see if BP meds should be tweaked due to low BP.  Yep ... I saw the freaking signs and felt something was wrong but didn't push anybody ... "craaaap" ... actually another word is more appropriate. Seeing the Friday afternoon tests posted at 11:00 P.M. is when it hit me. The dropping BP was a sign of dropping salts. I wasn't told this until today! Note that low BP and high pulse is an indicator of trouble and looking back at my charts, it was easy to see ... "craaap" again! Saturday night her vitals were 90/46 with pulse 87 ... I was nervous as hell but she felt fine and wasn't going to hospital which is what I was thinking. I told her to skip her night time BP pill based on what a nurse told me the week before when I was pestering her about low BP. BP was 130/74 the following morning ... nurse suggestion worked. BP seems to have leveled off in the 120s over 70s and may be because salts are coming back up.

The moral of this story is trust your gut and tell someone. If they don't seem to be listening tell them a little louder ... or a lot louder if needed. I gave the added info to my wife's primary care doc in case she was about to make wholesale changes to meds.

Steve

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  • 2 weeks later...

Update: wife has to have red blood cell infusion today after chemo and radiation. Blood test yesterday indicated really low count.  Symptoms of chemo this week (3rd cycle) not as bad, just a little nausea. Lump in throat feeling from radiation has gotten a little worse this 4th week.

Steve

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Hi Steve, I needed to have a transfusion of red blood cells when I had chemo for a non-lung cancer. The results were amazing. By the day after the transfusion I had a whole lot more enegy and I had abruptly stopped craving red meat. Generally I eat very little red meat, but when I was severely anemic I craved it and ate it every day.

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Well this day sucks ... sitting in ER ... thought my wife was having a heart attack due to chest, neck, back and jaw pain. EKG says no heart attack, CT says no blood clot ... good news is that primary cancer has shrunk but didnt say how much. Pain meds have helped some ... I think they are going to give something for esophagus in case that is it. This all started with 180+ BP this morning before chemo and radiation ... she got both but staff was worried about high BP and extremities swelling past 3 days. Went to primary care NP and got 3 more meds, 1 was a hi BP only med and the other 2 were for swelling ... so many darn meds, it's hard to keep track. They want to keep her overnight so trying to get a room. I guess tomorrows radiation is in jeopardy.

Steve

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Steve, I’m sorry you’ve both had such an awful day. Must have been terrifying for you both. My mom had a similar experience last December while in the hospital for an adverse reaction to chemo. Her pain was very similar to your wife’s but she was having a lot of shortness of breath just previous to the pain. She was given morphine and put on oxygen  which helped with her breathing and pain. The nurse told me the pain could’ve been caused by a lack of oxygen in her blood due to her shortness of breath.
I hope you both get some rest tonight and you’re both home tomorrow. Holding good thoughts for you both.

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Thx blossomsmom ... we appreciate your post. I just told my wife that blossom was your cat.  At least I think I saw a pic of your cat yesterday.

Her BP is finally coming down ... must be the pain meds ... unfortunately her Na is back down to 129 so she is back on liquid restriction. They are going to do MRI in the morning of her neck an shoulder area where there is pain.

Steve

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Thx Tom & Kristen ... wife's is much better this morning.

Thought I would update in case info is useful to others... low freaking Mg!  Some background ... this 3rd cycle of chemo was causing swelling in extremities due to lots of fluids (see Cisplatin). In addition red blood cells low so got 2 bags of RBC ... more fluids ... more swelling and BP getting up there! Chemo nurses concerned about swelling and BP but those are issues for primary care ... ooookay ... so luckily get primary care NP to see her immediately after chemo. Some concern about hi BP so as needed med prescribed (not important for this conversation) ... so let's do something about that swelling ... yeah great, let's do that.  Fomericide (sp.) which is a diuretic and K because loss could happen with bathroom visits. No mention of Mg by NP but get to CVS and they have prescription for Mg 2 x daily which superceded the 1 x daily. No big deal ... will give a Mg pill when normally given at night and will start 2 x daily manana! K was specifically talked about so my focus is on K. Get back from CVS at 5:00 PM and she takes diuretic and K and BP med. A little pain almost immediately but focused on bathroom and eating supper. Pain gets worse and eventually to hospital. Blood test but no check on Mg, hospital is just concerned about K last night. I left to get some breakfast and sleep with her BP around 130s/80s and pulse 90s. Get to her assigned room this morning and she's not there! They direct me to another floor which I'll call ICU light. This morning her pulse was over 140 and they could not control it. Hey let's do a blood test ... her Mg is 1.0! After heavy pain meds and 3 bags of Mg stuff ... she's eating, pain is tolerable BP and pulse back where it's supposed to be, all things considered.

Not 1 health care professional explained to me that Mg could be a big freaking deal and it certainly wasnt on their radar in the ER last night. It wasnt until this morning while sound asleep in my comfortable damn bed that she was in critical condition. My wife is the one that chased me out last night (hovering).

Anyway, I'll stop writing stuff.

Steve

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Steve,

I had 18 infusions of Taxol and Carboplatin and these caused my chronic low Mg levels.  I take 1,000 mg of Mg daily but still average a level of 1.6 to 1.8. This low level causes muscle cramps. My medical oncologist told me it is an under reported side effect,

Stay the course.

Tom

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Well ... my wife is still in the hospital and I don't get to see her. Got kicked out this morning .. only patients and staff allowed. I'm hoping she gets discharged tomorrow but unfortunately they can't find out why she goes critical blood pressure and/or pulse! I thought Mg was the issue but that appears to be something that was found while doing blood work.  I think they thought low Mg was the issue. Her blood work is good now and there are no blood clots. She still gets some really serious pain when BP and pulse spikes. Pain meds and additional BP meds are the treatment so far. This is pretty scary and I will be the one managing the symptoms if she comes home tomorrow!

I found some cancer literature that indicated unknown tachycardia does happen in cancer patients. Unfortunately, this hurts length of survival. We will keep on plugging away with this initial cancer treatment and hope more symptoms don't appear. They are wearing on both of us.

Steve

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Tom ... how's things going with you? Do you still have side effects from chemo? Be sure you get blood tests and have them monitor the various salts levels. I may make a separate post summarizing side effects and symptoms to date.

My wife didnt get released from the hospital today. They want a cardiologist to see her tomorrow. I was told that sometimes too many things are going on with cancer and cancer treatment symptoms that the body reacts badly in unusual ways. The heart arythmia is probably one such way.

She may miss another radiation treatment which really sucks. Especially since the primary cancer has shrunk about 1.5 cm (6.8 to 5.2). The radiologist looking at her CT described it as significant. 3 of 6 cycles of chemo and 4 of 5 weeks of radiation completed - 1.5cm doesn't seem significant to me but maybe the cancer is decreasing exponentially.

Steve

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Hi Steve,

Wanted to pop in and let you know I’ve been following the updates on your wife.  I’m heart broken about the visitation policy.  Shortly after I was diagnosed my husband needed unexpected surgery for the first time in our marriage we couldn’t be together to support each other as my counts were too low.  I know how hard that is.  You will be in our prayers that your wife’s medical team will get to the bottom of this issue  and she will be home soon.  She’s making great progress.  There is no straight line to success, be patient and persevere.   She’s a fighter.  
Michelle

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7 hours ago, MyWifeSCLC said:

Tom ... how's things going with you? Do you still have side effects from chemo? Be sure you get blood tests and have them monitor the various salts levels. I may make a separate post summarizing side effects and symptoms to date.

My wife didnt get released from the hospital today. They want a cardiologist to see her tomorrow. I was told that sometimes too many things are going on with cancer and cancer treatment symptoms that the body reacts badly in unusual ways. The heart arythmia is probably one such way.

She may miss another radiation treatment which really sucks. Especially since the primary cancer has shrunk about 1.5 cm (6.8 to 5.2). The radiologist looking at her CT described it as significant. 3 of 6 cycles of chemo and 4 of 5 weeks of radiation completed - 1.5cm doesn't seem significant to me but maybe the cancer is decreasing exponentially.

Steve

Steve,

Thanks for asking. I have learned the hard way to continue on my anti nausea meds longer next cycle. They do make me sleepy so I quit too early. I also, unfortunately, am going thru a cluster headache cycle.  Not related to cancer but really hard on me, even with abortive shots. I am hoping they go away soon.

To be honest....I would pick cancer over cluster headaches if given s choice. I know.....blasphemy.

Praying for your wife.

Peace

Tom

PS...get a complete CBC plus 24 hours before next chemo.

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On 3/19/2020 at 9:40 PM, MyWifeSCLC said:

Thx blossomsmom ... we appreciate your post. I just told my wife that blossom was your cat.  At least I think I saw a pic of your cat yesterday.

Her BP is finally coming down ... must be the pain meds ... unfortunately her Na is back down to 129 so she is back on liquid restriction. They are going to do MRI in the morning of her neck an shoulder area where there is pain.

Steve

Hi Steve, you’re right, Blossom is my cat. 
Keeping you and your wife in my thoughts and hoping for a better day for you both today. It must be agonizing for you not to be able to be right there for her in the hospital. Please know we are all here for you. Big virtual hug to you and Mrs. Steve ❤️❤️

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