Completely At a Loss

[kate1621]

Hello,

The past 2 weeks have been very hard, and I really could use your wisdom.

J. ended up hospitalized after 1 week of chemo. There's been a series of events that are making me highly uncomfortable, and we're thinking about changing doctors before he has next round in 2 weeks.

8/23 Started vp-16/cisplatin.

8/24 Reported facial abnormality, told not to worry. (His eye was droopy, couldn't whistle or smile right)

8/25 Reiterated concern about facial problems. Told not to worry. Otherwise, J holding up pretty well, slight nausea/vomiting/controlled with compazine.

8/26 Ditto

8/27 Reiterated concerns about face/getting worse.

8/29 Major vomiting, all day. Unable to hold down compazine. Kept pumping him w/small amounts food/water/gatorade.

8/30 Saw radiation onc. at our 6:30 am radiation treatment. He prescribed Zofran. (dissolves in mouth) J exhausted after 24 hours of vomitting 3-4 times an hour. Face very bad. I said I wanted it looked at, NOW.

Went for chemo after radiation. Chemo calendar from chemo suite nurses indicates vp-16 and cisplatin. Order from oncologist says only cisplatin. I told nurses nothing being administered until clarification, and until someone looks at his face!!

Physician's Assistant came to look at J's face. Ordered CT scan of head. PA comes back and says time for MRI, possibly meningitis!!!

Chemo order clarified, was a clerical error on nurse's end, received cisplatin while waiting for MRI. Had MRI, told we'd get results in a day or 2. I asked why, told noone available to read it. I said we'd prefer to wait to see if someone could read results. Miraculously, someone became available to read results after about 45 minutes. No meningitis.

Instruced to meet PA 8/30 after 1:00 pm to further evaluate face. J was very sick.

Zofran was a godsend. Seriously helped control vomiting, now biggest problem was loss of facial muscles, fluids dribbling out of mouth. Also dealing with discomfort from morphine side effects. (constipation/ taking sennacot, with little results)

8/31 J exhausted, still fighting vomiting. Right side of face almost completely collapsed!!

Met w/PA, they said blood test for Lyme Disease. (even though J didn't want to go in, not wanting to face any poking, needles)

She also said CT scan showed something, possible aneurysm!! Scheduled appointment in 2 weeks for MRA. Sorry, everyone on vacation, nothing available sooner.

I asked if he was dehydrated, reported how much fluid intake vs. how much urinating. (I had him going in a measuring cup) She said he didn't look "dry", and asked if he wanted to receive IV hydration preventatively. J wasn't up to it. He was in pain, just wanted to get in bed, barely able to walk.

9/1 J was feeling much better prior to radiation. On way home, serious cramping, seemed sennakot was starting to work. Wednesday brought on the diarrhea. He was sooo sick. I started pushing pedialyte on him. He was very distraught. Also, got inital results, positive for Lyme Disease, started antibiotic.

9/2 Saw radiation onc. in early am. Told him I was very scared that J was dehydrated. He was in a lot of pain, not eating or drinking. Face very bad. I told doc to either find a way to get MRA now, or I'd start calling around state to find someone w/sooner appt.

J sent to ER for hydration immediately after treatment. Kept there all day, resulting in admission to hospital, very low wbc/sodium counts.

The ER doc said MRI for meningitis not best test, should be spinal tap. Also said that Lyme test was initial test, further test needed, though antibiotic won't hurt any in interim.

Also got MRA, another miraculous available opening.

9/2-9/4 J in hospital. They let me stay in his room. He was very ambivelant, afraid. He requested that it be put in his chart NO OTHER VISITORS. He was still dealing w/diarrhea, very embarrassed, wouldn't let nurses attend to him, only wanted me. (Lord knows a nurse has never cleaned up vomit, )

I left Thurs. night for 2 hours, so I could work. Distress call came, his mom was there, he doesn't have it in him to evict her. I was very mad. It was in his chart, nurses should've kept her out. I immediately went back, explained that she had to leave. She said she understood that was his wish, but she "needed to see him".

After repeatedly asking, told that MRA was clear, no aneurysm.

Upon discharge, PA said sennakot probably caused diarrhea (though he took LESS than bottle indicated), and that he should've stayed for hydration on Tuesday when it was offered. Her manner was "scolding". She also had few choice things to say about ER doc, as though I really cared about their internal soap opera.

He's finally home, a little better.

He's meeting w/pulmonist on Tuesday. (pulmonist works from different hospital). J's highly uncomfortable w/how this all came down. He's upset that he didn't see med. oncologist once throughout entire past 2 weeks, that onc. passed him off to PA.

It's very frustrating that I have to repeatedly threaten to suspend treatment to get other issues addressed.

I'm coming down w/a cold. No biggie, but I'm worried about his low blood counts. They talked about giving him medication for it, but decided against it, w/no explanation yet, we need to ask med. onc, at our 9/13 appointment.

My house is a wreck, and I'm playing serious catch-up w/work.

Is this the way it's suppose to work? Are all oncologists just too busy? Should I be alarmed by the clerical error w/chemo orders?

Sorry this is so long, but I'm really confused, and feeling like his care could be better. I don't think the doc is incompetent, just the cancer center is small, w/many patients, and maybe he'll get better care elsewhere?

Thanks in advance.

Kate

[Andrea]

Oncologists should n ever be too busy for an emergency. Why dont you post your city and see if others have a dr in the area they like. Maybe you can go for a 2nd opinion

[Cindy RN]

a chemo error could of been a very critical error. I can not believe the treatment you all recieved.

List an area where you are from and maybe someone could suggest another place to get a second opinion FAST.

Cindy

[tnmynatt]

I think you need to find another onc. who has time for J. as a patient--not just an ins. payment. I am so sorry for all that you'll have been through. I'm praying for you both. Take care.

[stand4hope]

Kate,

I have read your post several times and tried to put myself in the same position. I think that if it were me, and my husband had that problem with his face that continued to get worse and you continued to try to get someone's attention - and didn't, that I would change doctors, or at least get a second opinion. I gave this a lot of thought because you said you feel the doctor is competent (and that's worth a lot of extra points), but still, I think this was quite serious and should have been treated as such.

I like Andrea's idea about asking around and getting a second opinion.

Best of luck,

Peggy

[Justakid]

I am also at a loss.....I have had several reactions/side affects that were ignored or brushed away. Also had my chemo drugs "mixed up". I switched Dr's. I also never go to any appt alone, my Mother always goes with me. She also keeps detailed logs on my attitude, physical problems and appearance. That way it can be addressed with the Dr. If anyone is going to tell someone off, it's my mother!

Good luck!

[Hebbie]

My heart goes out to you that you and J have had to deal with this on top of the 'standard' worries that come along with this disease. I too strongly encourage a second opinion.

And to answer you question "Are all oncologist just too busy?" the answer is NO. For example -- I had a swollen lymph node in the back of my neck for a couple of weeks, and finally called my radiation oncologist. He didn't tell me to "wait and see".....he didn't ignore my call.......he called back personally about an hour after I left the message and told me to come see him THE NEXT DAY. When I got there, he did a scope (up the nose -- ew!) to see what was going on, thought it may simply be an upper resperatory infection, prescribed an antibiotic, and just to be sure --scheduled and CT Scan of my head/neck for 1 week later. Fortunately, all was clear. But if he had been "too busy" to take me seriously, it COULD have been a different story.

Please don't accept less than you deserve. And J's life is so much more deserving than what he is currently getting! We all learn very quickly that we need to be our own advocates -- please seek a second opinion!

[Justakid]

One more thought, I got more attention and concern from the radiation oncologist then the regular oncologist. The radiation Dr was more willing to listen, run tests and seemed to care more!

My original Oncologist made me feel like I should purchase my coffin after the first meeting. My Radiation Oncologist said she felt I could be cured. Quit a difference! Told the Rad Oncologist how the regular Oncologist made me feel and she was floored!

[TAnn]

Kate,

I am so sorry that you have been through this nightmare over the past 2 weeks. I really don't think this is the behavior of a competent doctor. It sounds to me like he should have been concerned enough to see J. at some point during this time. Please consider seeking a 2nd opinion, I think you may be surprised that another doctor will give you the care you are entitled to.

I'm still shocked that they didn't think it was a big deal to have facial problems immediately after the 1st chemo J. had. My dr. would have had me come in right away. They make it clear to me that they want to know every "little" thing that is different during chemo. I really hope that you are successful at finding another doctor. This one scares me. You and J. deserve much much better.

TAnn

[paddy]

Hello Kate,

So sorry you and J are going through this. I have been through a lot of nonsense with medical people so I know how frustrated you must be. I think you might need to go for a second opinion as the others say. At least it would put your mind at ease. Also it sounds to me as if you are getting your mind in a spin. Perhaps the cancer society could help you sort things out. Good Luck and prayers going out to you. Paddy

[Laurie]

Kate,

I'm so sorry that you and J are going through this, it sure is scarey and you have every right to demand the best possible care for J and he is lucky to have you on his side.

My mother had this drug Cisplatin/vp16 and it is a really heavy cancer drug. I thought that it was a standard first line chemo drug usually mixed with vp16 which is also called epotisode or something like that. I always see them together. Better to make sure. The good new is it killed my Moms very large tumor!

My Mom had this severe throwing up that you are talking about (everyone is different) and the hydration is so important because the medications on an empty stomach can make him throw up. Then he will throw up the anti nausea and it is so important to keep hydration to end the viscous cycle. My mom ended up being on IVs every chemo and it really helped her. The blood cell meds, hydrating IV's, and yes blood transfusions are essential to aiding the body to heal and keeping everything inbalance so that J can stop vomiting and get the rest that he needs.

It sure is terrifying to see your loved one vomit. Once We learned to actually stay ahead of the cycle and that is the key. My Mom actually took suppositories at times for vomiting because she would throw up the Zofran. Once we learned that she needed the meds sooner we gave them to her before she got sick so she was able to rest and drink a little bit during the first days. The water and hydration is essential to aiding the Kidneys to flush out the chemo and the throwing up will stop sooner. The first few days are always the worst and the first chemo is a Learning process. They can adjust the medication and Each time you will learn the warning signs to help keep the vomiting at bay. I hope that this helps you.

As for the other symptom I agree that should have been taken very seriously, no matter who is on vacation I don't blame you for wanting another doctor.

Take care and hang in there. Please keep us posted.

Sending you huge hugs.

[Nushka]

Just my opinion, but I would see another doctor asap. It sounds like you are getting the run around and that is NOT acceptable. I know a PA has lots of experience but not as much as a doctor. The doctor should have seen you personally. You have enough on your plate with work and this disease to deal with...having a doctor who is too busy to take his patients seriously is just too much.

Nina

[MayFrog]

Wow....what a horribly exhausting and scary 2 weeks this must have been for you and J. I agree with the others, 2nd opinion ASAP!!

When J first started experiencing facial muscle tone loss....I am floored that you were told "nothing to worry about"....what about stroke? permanent damage from chemo?.....that's nothing to worry about???

I had the combo of Cisplatin/VP-16....luckily, I had minimal nausea/vomiting. Does your center give anti-nausea meds prior to infusion of chemo? I think that's a big help.....it's standard here.

Sounds as if you need to find someone who is going to treat J as a whole person...and be there when you need him/her. The brush-offs you've been receiving are unacceptable. Sure, oncologists are busy people, but the should be busy with US, their patients!!

Please post your city/area.....you need to find someone who will give you their best.........

Thinking of you and J,

Mary

[carrie]

Kate,

What an experience. I would immediately start looking for another Oncologist. I had cisplatin once and it made me so sick (vomiting, constipation) that I told my oncologist that I would not take that one again and he is putting me on Navilbean along with the Taxol that I also take. Good luck and I hope things get better for you and J. I will keep you in my prayers.

Carrie

[john]

It sounds like your husband has Horners syndrome. It will cause drooping eyelids (ptosis) and only half of the face will sweat (anidrosis)

It could also be SVC (superior vena cava) syndrome, where the face swells up.

They can be caused by a pancoast tumor

There are a few survivors on here with pancoast tumors. Donna and MaryAnn

[Donna G]

I was thinking the same thing. Seeing that the tumor is a Pancoast tumor it is extremely likely that the symptoms are due to the tumor.

I pray that they are able to shrink the tumor - that will relieve symptoms. Donna G

http://www.emedicine.com/radio/topic515.htm

Above site has lots of Pancoast info.

[Remembering Dave]

Kate,

first of all, yes, I'd look around for another oncologist. He definitely should have had access to his oncologist through all of this. I suggest you talk directly to the oncologist and tell him all of this. In fact, print out this post and take it to him. He may not realize what's going on in his office and that patients are not being given access to him.

Second, Dave is taking cisplatin and he gets a prescription drug called Emend to take for nausea while getting the cisplatin. It's a pill, you take it the morning of chemo and one the next day and the third day. It's VERY expensive, like $100/pill but his prescription drug coverage gets it down to $40 for the prescription. It really works wonders it seems.

Stay on top of things like you are. You are doing a great job being his advocate. And yes, I would NEVER settle for waiting for any test like a MRI or MRI saying someone wasn't available is BS. I would go to the ER if the regular doctor's office couldn't get it scheduled ASAP.

I really feel for J, he is going through alot of physical stress. Hang in there and please keep us posted on how he's doing and what else they find out about him.

Karen