Help for my dad

[alicia]

Hi. My name is Alicia and I'm 29 years old. My dad is 63 (will be 64 on Jan 1st) and was dx'd with nsc Lung Cancer in on May 11, 2006. He never smoked, and was healthy and active and hardly ever went to the dr since having his tonsils removed when he was a kid. In November 2005, he started havin leg/hip pain, which he thought was a sciatic nerve problem. He had been playing on an adult softball league and thought he might have pulled something. He then started noticing SOB and some wheezing. (He'd been dx'd with "athlete's asthma 5 or 7 years prior because he would wheeze a little bit if he was exercising and sprinting the last lap on the track) The wheeze started turning into more of a bubbling or percolating sound like when water is boiling on the stove, which he found odd and that's what pushed him to go the dr. After months of going back & forth and having x-rays, CAT scans, inhalers, antibiotics, etc., we finally demanded that a biopsy be done. It was done on May 10, 2006 (my birthday), and on May 11, he was told that it was indeed cancer. The PET scan revealed that it was Stage IV and that it had spread to both lungs, lymph nodes, the liver, portions of the spine and he has a tumor on his femur bone. (I know there are several other small spots, but I'm not thinking clearly enough to name them all) Anyhow, he started Carbo/taxol on June 14, 2006 and did okay the first treatments but had severe leg pain as his main side effect. On June 19th, the dr. called and said that his CAT scan revealed the he had a pulmonary embolism and told him to go to the ER and be admitted to the hospital. They saw that he also had some pleural effusions as well as some fluid around the heart, but decided to let that be for now and see if the chemo, blood thinners and lasix would alleviate that. They started him on blood thinners (Coumadin)which he's been on ever since. When he went for round 2 of Carbo/Taxol on July 6, 2006 he had a reaction and they sent him to the ER. They did not "challenge the Taxol" as I've heard be done to others after this event. He was switched to Carbo/Gemzar, which he started on July 14, 2006. He then began getting Aredia infused for his bones as well beginning August 4, 2006. He did okay throughout these treatments and was still playing softball when he felt up to it. He had 1 or 2 treatments postponed due to low counts, and was eventually given procrit beginning in October. CAT scans showed that there was a slight reduction in tumor size after the carbo/taxol treatment, but with the Gemzar, things had just been held at bay by the end of his 6 cycles. He had a month off from November to December and was feeling great. Said he felt better than he had since being dx'd and was playing baseball and seemed to have his wind back for the most part. He began a new treatment with Alimta on December 6th 2006 and thats when everything went downhill. He was really tired and then had some type of stomach issues for a few days with diarreah. On Dec. 15th, he started having pain across his chest that became severe along with shortness of breath. He was rushed to the Er, and they kept giving him nitro in case it was a heart attack. It took hours before they could give him pain meds and my dad doesn't usually complain, but his pain was like a 15 on a 1 to 10 scale, and you could tell. They finally did a CAT scan, etc. and found that there was excessive fluid in between the heart and the pericardium that was constricting the heart. On Dec 16th at 7pm the dd a "window" operation to drain fluid and make a hole in the sac to allow fluid to drain so that it wouldn't build up. They drained 1200ccs (more than a liter) of fluid just from around the heart. He looked much better the next day, but then each day he seemed to feel worse. He still felt short of breath, he had pain in his back, his blood pressure would get low and his heart rate high. They monitored him and he stayed in the hospital until Friday Dec. 22nd. We knew he didn't seem that well to come home, but the doctors said he was okay. The whole weekend, he had a lot of pain in his chest and back and had to take pain pills, which he tries to avoid at all costs. He was very tired and still had labored breathing and his blood pressure and heart rate kept going all over the place. We had a nurse check on him and she said he seemed okay. Then on Dec 27th he just slept a lot and seem out of energy. On Dec 28th, the nurse checked on him again and his blood pressure was only 90/76 and his heart rate was 140. So he went to the Er yesterday and they still haven't been able to get his heart rate to go down after several does of medication that would normally help. Last night at about 9pm, they drained 1 liter of fluid from his right side with a needle and decided not to do the other side for fear he would be to weak. As of yet, this hasn't helped. The dr's don't know why the heart is racing except to guess that the cancer has spread to the heart, yet the fluid tested from the heart drainaged was negative for cancer and they haven't seen anything in the x-ray, EKG, CAT scan, etc. His heartrate is still 130 and up. Anybody with any symptoms even remotely similar? Was it coincidence or did the Alimta really screw things up? I'm reading now that Alimta isn't reccomended for those with pleural effusions, yet they knew he had them, so could that have made it worse? Any advice would be greatly appreciated. He hates hospitals more than the average Joe and he just go out before Christmas and was in there for my mom's birthday, and if he's in the hospital for his birthday on Monday, I think he'll just walk out. Thanks

[Don M]

Hi Alicia: I have had 4 rounds of alimta, but never had the problems that your dad is having. I have heard that alimta can cause severe sob where the air sacs become destroyed, but that is very rare. That condition is not in the documentation anywhere, but it has appeared to happen to some. I have also read that use of alimta is not indicated if pleural efusions are present. I don't know if your dad's heart would act like that because of the effusions or not. You could run your dad's situation by Dr West. He has a site at:

http://www.onctalk.com/forum/

I hope you dad's heart gets stabilized and he can get back to treatment.

Don M

[alicia]

Thanks, Don. I went on Dr. West's site ad sent him an email. Hopefully he will have some advice. Best wishes to you.

--Alicia

[kreed70]

Hi Alicia~

Welcome to the best support site ever! I'm sorry that we have to meet under such tough circumstances!

After my mom had surgery, her heart raced several different times but they finally had it controlled w/ meds. She is on Alimta as well but hasn't had heart or blood pressure problems. I have noticed her being more SOB and had more of a wet cough but that might not have anything to do w/ the Alimta as she said that it's hard for her to catch her breath when the pain is bad and she has been having a lot of pain lately.

I hope that you are able to find out what is going on!

Kelly

[Heather_T]

I am sorry about your dad and wish I could give some advice. I hope Dr. West might give you some answers. I know it has to be hard hang in there.

Heather

[Welthy]

Alicia,

So sorry about your Dad's problems. I hope they get these sorted out PDQ. I vaguely remember someone else posting heart rate issues several months ago on these forums.

As for the Alimta -- what was the Doctor thinking?? Did your Dad have the effusions prior to starting the Alimta? Don is right -- effusions prohibit Alimta use due to unknown levels of toxicity. It is definitely in their literature. My husband hasn't been able to use it for the effusion reason.

Your Dad's pain must have been horrific if they drained 1200 cc's from his heart area. I just can't imagine how bad that was for him. As for the pleural effusion, they typically won't do both sides at one time in case one lung decides to collapse. They like to have some wait time between for things to kind of settle down.

I'll be thinking of you and your Dad. Please keep us posted. ((HUGS))

Welthy

[ernrol]

Alicia Welcome,

From what you have said and my limited experience, I think that I would get your dad to a major cancer center like Sloan Kettering or M.D. Anderson for a second opinion. If he is able to make the trip I think it would be worth it. My cancer was stage IV with a pleural effusion, but I never went through any thing like that. It sounds like he might be a candidate for Avastin along with the chemo he is taking.

Stay positive,

Ernie

[alicia]

Thanks again everyone (Kelly, Heather, Welthy and Ernie)

Ernie, thanks for the suggestions. I read your story and was amazed at your progress and dedication to diet and supplements, etc. Unfortunately, my dad is nothing like that. He can barely swallow a pill and can't stand taking the few medications that he has to take and doesn't care to try vitamins and supplements that we've suggested. My dad would definitely not be willing to fly for a second opinion. To be honest, my dad is just not a fighter, and as much as that annoys his family around him, he has lived 64 years with that attitude and personality and nothing we can do will change that. If anything, it just causes him more anguish and stress for us to keep bringing up other alternatives because he just can't process all of the information. It would take forever to explain what I mean, but the point is that he is a "homebody" and is only willing to do what is available to him at his medical facility. It was hard enough for him to make the decision to proceed with chemo, etc. because he gets so discouraged and hates hospitals so much. He went from never having to go to the doctor (which he's now grateful for) to being there 3 or 4 days a week and getting poked and prodded and having allergic reactions and going to the ER and everything else, and he's just disgusted with it all. In the end, only he can make decisions as to how to proceed with his care, so we have to respect that even if we don't completely agree with it. There is no question that I do not wish to prolong his life for my own selfishness if that means he will be miserable and have no quality of life, but it would be nice to know that we tried the options that could potentially give him more quality time during which he still feels good. His heart rate went down a little this morning, so they are still trying different drugs to stabilize it. At this point, they say any surgery around or near the heart can cause rapid or erratic heart beat as a side effect, but with all of his conditions, it is more extreme. They still haven't proven it, but the doctors believe that the cancer has spread to the heart or the lining around the heart which is also contributing to the problem. As for the fluid around the lungs, the only way to remove that "permanantly" would be to do another procedure with drainage tubes, which my dad has not decided whether or not he is willing to do at this point. As dor the Avastin, I'll have to look into that. I know there was a drug (I thought either Avastin or Tarceva) that he couldn't use due to being on Coumadin. Thanks for all of your help and suggestions. I'll let you know what happens.

[mary colleen]

Alicia, I haven't much to add here in terms of suggestions, all you have received are from folks with all of the right experience and knowledge. However, I do understand what you are saying about your dad's personality, how it is impacting his approach to this, and what a struggle all of that is for you. You and your family will be in my thoughts. Do the best that you can do in a situation in which you have limited control, and be strong. Mary Colleen

[Tracey Huguley]

Hi Alicia,

Just wanted to say welcome here....

I'll be praying for your dad and family...

Sending hugs your way....

Love,

Tracey Huguley

[joanie55]

The only thing that jumped out at me was that your dad really doesn't want to take, even pain meds. That is probably the one thing that's given me quality of life for the past 20 months.

If you are in pain, there can't be any quality and that's the one promise I've asked my husband for. No PAIN!!!

Some of these pills are amazing. They don't make you tired, Virtually no side effects, but you can feel normal again.

I never even took asprin before LC. so I really understand how he feels.

Joan

[mitzu]

Hi Alicia,

This could be a possible answer for you: sometimes the lung tumor, or the fluid in the chest cavity presses on the heart and causes it to have arrhythmias, or fast heart rate, or even a slow heart rate. I have seen that because I'm an RN in cardiology. I'm not saying that's the case with your Dad, however it's something you might want to consider asking the doctors.

Hope he feels better...

[alicia]

Thank you all again. For Joan, my dad has begun to realize the importance of pain meds. He was convinced by all of the reports you hear about pain pills being addictive that he would somehow become an "addict", but a nurse finally explained to him that he will function much better and heal better if he takes the pill when he really needs it. He still tries to wait as long as possible but at least he'll take one now. For Mitzu, we did ask the doctor's about the fluid around the lungs constricting the heart and causing the erratic heart rate, but they told us that wasn't the problem and they are still convinced that it was a result of the window operation that was done on Dec. 16th to remove fuid around the heart and they also think that the cancer has spread to either the lining or the heart itself. They finally stabilized his heartrate last night and then before my mom even got there this morning, the cardiologist saw him and ordered him to be released. I thought they were going to monitor him for 24 hours with the IV meds and then give him the pill form for 24 hours to make sure it stayed stable, but I guess not. Maybe my dad pleaded to go home since it's his birthday tomorrow. Anyhow, they then had the nerve to call my mom to update her of his release at about 10:30am and tell her that he must be out by 11:00am or else the insurance will charge an out of pocket stay for another day and that if nobody was there to pick him up by 11:00, they would send him out to wait in the public waiting room in located in the main entry lobby of the hospital. Unbelievable! So I called and spoke to a different nurse to say that my mom was on her way and would be there at 11:15, and she said they would let him stay until she got there. So annoying! Plus, I've been sick this whole week with a cold that turned into bronchitis, so I haven't even been able to see him. Sorry to vent. Anyhow, my dad is quite depressed right now and doesn't want to talk much. The doctor's want him to do another procedure to remove the fluid from around his lungs where he'd have to have drainage tubes in for several weeks, but he hasn't decided if he wants to do that yet. I think we'll just try to get through his birthday without anymore doctors and go from there. Thanks for listening

--Alicia

[Judy-OK]

Alicia .... I was also a person that had never even taken much asprin in my life before being diagnosed with a ruptured disk which was quickly followed by the lung cancer. I do not know of a delicate way to put this but please let your dad know that along with the pain medications he may want to take a stool softener. I learned the hard way that those pain meds can cause all kinds of constipation. Keep a posititve attitude and we are always here to give our opinions, advice, or just listen if that is what you need.

Judy

[alicia]

Thanks Judy. He's actually been using a stool softener since beginning the chemo due to the anti nausea meds, etc.

[DrWest]

Alicia,

I know you saw my response to your question that you posed to me as an e-mail, but I just wanted to clarify for others that while there is a warning about giving alimta to people with effusions, that was based more on a theoretical than established toxicity risk. In fact, Alimta was first approved for mesothelioma, cancer of the pleura, the lining around the lung, which is very commonly associated with a pleural effusion. While it is great to remove fluid from around the lungs for several reasons (relieving symptoms and allowing the lungs to expand better), most oncologists, including the majority of lung cancer experts from major centers, now have come to believe that the effusions really don't add any added significant toxicity risk. It's certainly not the case that your dad's oncologist was way outside of standard practice in giving alimta here -- there's even some discussion of trying to generate enough data to prove a lack of increased toxicity in order to formally remove that warning.

I would just add that your father may well do better and feel better if he has the Pleurx catheter placed to minimize fluid collections outside of his lungs. It seems that the fluid is still contributing to him feeling poorly, and it really may help as much or more than chemo.

[RandyW]

Hope your Dad has a HAppy Birthday today Alicia. Sending Prayers and Good thoughts!!

[joanie55]

Alicia,

Like Ernie says, I would definitely ask about Avastin. Also, please stress to dad not to wait to take pain meds, as it is harder to take away pain, once it is there. I've been on long acting Oxycontin since the beginning. Having no pain, I just keep taking it. Once in the morning 20 mg. and once at night (20 mg). I live a pain free life. (thank goodness).

Besides the stool softeners, make sure dad drinks plenty of water. That is the side effect of the pain pills (constipation). I think its a good trade off, because this can be controlled.

Happy Birthday to Dad.

Joan

[hockeyma]

Alicia,

So sorry that your father is ill, I totally agree with Joan as far as pain meds and stool softeners. My husband had a really hard time for the 1st month and a half getting all of this in order. Now that it is - it is so much better for him and for me. He takes oxycodone 10mg morning and night as well 2 every for hours. He takes Soflax and another softener. Ger never took all of this stuff before and the point is like our family doc said....you don't need to go through anymore pain than necessary - you already have enough to deal with emotionally as it is. I am sorry about the way the hospital treated your dad. Thank God here in Ontario we "appear" to have fewer issues with insurance and medicare. That is another worry which one just doesn't need. Best of luck and stay positive ok.

Heather