First Dad, now Mom, both with stage IIIB

[ErinC1973]

Ok, I guess I need to accept that this is where I need to be. Bear with me because this WILL be long, but I'll keep it as short as possible!

My dad was diagnosed with NSCLC Stage IIIB in 12/98 and lived just 9 months (passed away 9/2/99). He received different combinations of chemotherapy including Taxol/Carboplatin combo, and all combinations left him weak, sick, and constipated. In all honesty, he gave up right away, and I was just informed by my mom last year that he never quit smoking because in his opinion, "the damage was already done." The cancer had metastasized to the lymph nodes (he had a softball sized tumor in his upper right lung which was pressing on his esophogus) and eventually, spread to his left lung and then to his brain.

So he passed away on 9/2/99. In November the same year, I took my mom for her mammogram and she was sent to radiology that day for an x-ray, which showed a small mass in her left breast. FNA biopsy was inconclusive, and a lumpectomy was done. She was diagnosed with ER/PR+ breast cancer stage I, seven weeks after we buried my father. She underwent 33 radiation treatments and took Tamoxifen, which she would have been on for five years and thus declared "NED" last month.

In February she was placed on hemodialysis, after a diagnosis of PKD (polycystic kidney disease) and doing rather well, save for the fatigue associated with the hemodialysis. We all thought, now THIS is what she needed to get well. Also, as a side note but equally important, my mom is in Post-Polio syndrome, as she has had Polio since age 13 and developed scoliosis from it a few years later, so in the past few years she has degenerated progressively so that she is pretty much confined to a wheelchair.

In October she had a cold which never seemed to go away and complained to her nephrologist of shortness of breath and back pain. Long stort short, she went through two thoracenteces which were biopsied and showed "suspicious" cells. In the meantime, she had also been seeing her orthopaedic surgeon and going through physical therapy, and since he was a friend of the family, ordered an MRI and admitted her. The next two weeks were hell as she had a chemical pleurdodesis with talc to control the fluid buildup, and a bronchoscopy which showed "numerous small tumors in the pleural lining." Obviously with malignant pleural effusion there has to be a primary tumor, and they could not find it at this hospital. She was actually released with no concrete diagnosis. One day is was recurrent breast cancer, the next it was primary lung. We returned to her oncologist, who initially recommended Femara, (for the breast cancer) and then left the room, returned with more results and said, "Oh, this tumor is ER/PR NEGATIVE, this is not breast cancer." So we were back to not knowing where the primary tumor was. At that point I told my mom we were headed for Cancer Treatment Centers of America.

We left on Dec 1 for the Zion hospital with my husband, twins, and my mom's caregiver (she lives with us, and her caregiver is my best friend) in tow. The hospital is only about 75 miles from us so we are pretty lucky. We did the 3-day appointment and were amazed by the staff and what they offer, to say the least. During that time, she repeated her scans and we went back last week to meet with the oncologist, who told us that there IS a lung tumor (from what I understand, rather small) in the right lung, something in the left lung which is VERY small and they're not sure WHAT it is, and of course the malignant pleural effusion makes this stage IIIB.

The course of treatment which was recommended to her was IRESSA, and this is ironic to me because IRESSA was in a clinical trial when my dad was undergoing chemo in 1999. It was my understanding that IRESSA is only offered to patients who was failed two other forms of chemotherapy, but the oncologist at CTCA said he would fight to make insurance cover it since they are all in agreement that it would be the best bet given the kidney function, and it is questionable what would be dialyzed out and what would actually get to the cancer. Plus, we met with the medical oncologist yesterday and he said the dialysis is NOT a major factor, but her Post-polio syndrome IS, because chemotherapy can cause nerve damage, which we obviously do not want. She is to take the IRESSA for one month and return to CTCA to repeat the scans. We also met with the nutritionist who emphasized high protein (which she is on for dialysis) and a few other things. All in all we are pleased with the oncologist, and he said they MAY consider tomotherapy in the future, once the tumor is shrunk from the IRESSA.

All that being said, I am mentally and physically exhausted from all of these trips to CTCA, and with the holidays coming and presents to get. On top if it all, my twins' third birthday is tomorrow and I am not prepared at ALL for it because we've been going up to Zion so frequently. Yesterday we were up at 3:45am for her appointment, and we didn't come home until 7:45pm, because we met with the nutritionist, the therapist, the radiation oncologist, and the medical oncologist, one appointment on top of each other. Today I got the phone calls from the case manager (I am dealing with this because my mom is at dialysis) regarding her IRESSA prescription and just got the news that it will be $1839.54 WITH her prescription card. I told the mail order pharmacy to hold off putting it through for now because I'm hoping we can get it for cheaper than this, although from the looks of it, those chances are slim to none. Does anyone perhaps have another discount online pharmacy they deal with that is cheaper? I realize that you do what you have to to get well, but she already drops about $600 per month on prescriptions for her renal insufficiency, so this is going to be a shock to her when she comes home. And also, if anyone is going to CTCA in Zion, I'd love to talk with you! We have met some wonderful friends already and I'd love to expand that circle of friendship, although I am sad that we have to share this tragic diagnosis. And maybe we can also learn from each other.

Thanks for listening if you've made it this far.

Erin

[Donna G]

Erin, first let me say welcome.

Wow, any one of the problems of your Moms is so difficult, lost her spouse, polio, PKD, breast cancer, and now lung cancer.

I Have heard that some drug companies will give a break for compasionate use. Wonder if your Mom would be considered. Please keep us posted. Donna G

[Frank Lamb]

Erin,So sorry to hear you have so many things to deal with.Your mom sounds like a very courageous women,it must be tough to deal with so much.

There are several members here taking Iressa and doing quite well with it.Hoping and praying you can find a way to get it affordably.

As for all your doing I'm sure your just about at wits end.I know it's easy to say and hard to do but make sure you find a way to take care of yourself thru all this.

[Ry]

I am sorry you have to go through this with another parent. I hope the Iressa works it's magic for your mom.

[Don Wood]

Erin, you've been through and continue through a lot. When your dad was being treated, as you said, Iressa was experimental and given only later. Today, it is accepted and some doctors start with it, depending on the circumstances. There is now another pill on the market -- Tarceva --so there are a number of things to try for NSCLC. Take care of yourself as well -- with all you are doing, your resistance may wear down. I wish the best for you all, and hope you have a good holiday. It is good that you have a plan. Don

[kimblanchard]

Just a little Iressa info. We had presciption coverage and the insurance covered it. If it had not been covered, the price was $2037 for 30 pills just from our regular pharmacy, so I wonder how your share can be so high. Are they covering only $200 or so?

Free drugs - if our insurance was not going to cover it, the onc was going to fill out lots of paperwork to try to get it free from the company. I don't know what all you have to go through as we didn't have to do it but I know it is done. Or at least they might give you some kind of deal, since your mother is dealing with so many issues. I can't find the phone number but I would start with www.iressa.com or maybe your onc can arrange something.

I am so sorry you have all this to deal with but you can do it, you are already doing it and doing it well.

How about a trip to a toy store with your twins and let them pick out something themselves? It might be a bit tough but I bet they would love it.

Best of luck, Margaret

[stand4hope]

My goodness, Erin, you have had one big roller coast ride, huh? I'm so glad you decided to come here and talk to us. You've got a big load to carry. Let us help when we can.

Love,

Peggy

[Fay A.]

Erin,

I wanted to let you know that researchers are looking at the use of Epidermal Growth Factor Receptor Inhibitors to treat Polycystic Kidney Disease. I don't know if Iressa is one of the EGFRs being evaluted for use in PKD, but I do know that when I used Iressa in a Clinical Trial my PKD remained stable. Since I stopped using Iressa there has been significant progression in both the Lung Cancer and the PKD with increase in the number and size of the cysts in my kidneys and liver.

Tell your Mom she is not alone in dealing with PKD and Cancer. I'm learning that there are an awful lot of us out here who have both, and that some of the researchers think they're linked by genetic mutation. Researchers at the U of C in Ohio identified strands of defective DNA on several genes that they feel are responsible for some forms of Lung Cancer. Defective DNA of these same genes causes PKD. So we aren't dealing with just renegade nephrons here.

So keep coming back...you're among friends.

[shelliemacs]

Erin,

I can certenially understand where you are and what your going through. I lost my mom and dad 9 months apart to LC as well. I lost mom last august after only 6 months and I lost dad this june after 6 months and 1 week. On the day of my fathers funeral my sister was dx'd with breast cancer and is still in treatment.

my mom had NSCLC and it crushed her esophagus and she could not speak and it went to her brain as well. My dad was SCLC and it was going very well for 5 months and one day the bottom just fell apart and it took over the lining of his brain and he was gone in 30 days.

There is nothing like this hell. I can be your listening post as well as a kicking post if you need one. I don't have any kids yet though. I tried but lost them both at and just before birth.

Just when you think you have suffered enough, your kicked again right. well I just wanted to let you know I understand and am here for you.

[cindi o'h]

Hello Erin.

Holy buckets you got a lot going on. Like it's coming out both ends...

twins, lost parent, chronically ill parent and now mom with a confusing lung cancer and treatment.

So much going for you at the same time. Two kids to keep your attention occupied and focused on their needs..and there has to be a lot of laughs at the shenanighans they pull. Gotta be a nice diversion from the reality of another serious dx for your mom. A best friend who is your mom's and your confidant...right there to help manage everything. A mom who probably has tons of courage sitting in her pockets to use whenever she needs it. A good medical facility with trusted professionals on board to help your mom through all of this.

An on line support group (us) who can help you, your mom and your mom's caregiver through anything! We are here for you.

Take your flinstone vitamins too. You will need them.

So glad, so very glad that you have this opportunity to help out your mom again. Sounds like you and she are close. What would she do without you? This is tough, no doubt. You must be a younger woman. WE Women, we are gladiators!!! This is definitely some character building times for you.

Angie, daughter of Bill has always intrigued me with her faith, her courage, her love, her outlook. May I suggest that you read some of her words that have helped her to get through all of this?

Wishing all of only the best for you and your family.

love, Cindi o'h

[paddy]

Dear Erin,

What a lot you are going through right now and what a wonderful daughter you are to take such terrific care of your Mom. As for the Christmas presents, I say buy for your immediate family but tell the other's that you just can't cope with it this year. I really cannot handle things this Christmas either and I am settling for home-made gifts and goodies. You cannot do it all at once you know and people will understand I'm sure. Lots of love to you and your Mom and family. My thoughts and prayers go out to you.Paddy

[ErinC1973]

Hi again to everyone, and may I say, "WOW!" I just love this place. I was on a message board through AOL way back in 1999 when my dad was diagnosed and AOL got rid of it. I learned a lot from that group and I miss it but all of you seem like such a super bunch of people, I am already hooked on you

In general, my mom went ahead and ordered the IRESSA through the mail order pharmacy because I told her she needed to get started on it ASAP. We will be looking into other options for her--I've already started looking into IL's circuit breaker program and other pharmaceutical discounts for her so I'll keep you all updated on that. She is feeling pretty well, the Morphine really seems to be doing the trick for her and she hasn't needed the liquid at all for breakthrough pain. The IRESSA was ordered on Thursday and came Friday so she's on day 3.

Donna, thankyou for your reply! I will definitely look into your suggestions about the drug companies!

Frank, my mom is absolutely my hero. Thanks so much for your kind words.

Ry, I'm hoping the IRESSA does the trick, too. It is a drug I am trying to learn all I can about, as it really fascinates me.

Don, VERY intersting info about the Tarceva. I also saw the ad about Assist-2 on here as a clinical trial. I am absolutely amazed at how many things have changed since my dad was diagnosed. I am a member of ALCASE but have honestly not been such an active member since my dad's death because it was just too painful, but seeing all of these new options is so uplifting to me I am ready to help her face this demon head-on.

Margaret, my mom's script card is just a discount card, and since she's on Medicare her secondary insurance has to pick it up--which it obviously doesn't do much about, only about $250. The rep from the mail order pharm told me the price on IRESSA has actually just gone up by $200 in the past two weeks!

Peggy, yep, it's a roller coaster ride I didn't want to get on. Thanks so much for your warm welcome, and I am sure I'll be doing so muhc whining here you'll all will my computer to break down!

Fay, your post was VERY interesting to me. Why did you stop using IRESSA? You seem to be very knowledgeable on the subjects of kidney disease and LC so I am problaby going to be doing a lot of clinging to you! It doesn't sound like you are on dialysis, is that correct? My mom was diagnosed with PKD and then went in to the hospital for rotator cuff surgery and after 6 weeks of rehab she was set to be released and a nephrologist came in out of the blus and told her he really didn't want to release her until she had a blood transfusion. That's where it all really started, and when she came home she had weekly labs and was declining health-wise at a rapid pace--i.e., no appetite, sleeping all the time, yellow color--and we got a call from the nephrologist who said we needed to admit her immediately and she needed dialysis. When we went to CTCA last week to meet with the oncologists the medical oncologist, (who was such a sweet man I broke into tears) saw her tattoo from the breast radiation and said he had a patient a few years ago who was treated with rads to the breast and a lumpectomy for breast CA and years later developed lung cancer just outside the radiation field from those rads. He said he wasn't necessarily saying this is what happened to my mom, since he knew she smoked (she quit in 1999, the day of her lumpectomy) but it was still interesting. All the research I do on ESRD and chemotherapy leads me to "cancer patients who eventually need dialysis from the chemotherapy" but very little is said about those ESRD patients who are later diagnosed with cancer. I will be keeping you informed and tracking your posts. Again, thankyou for responding to me and letting me know that she is NOT alone!

Shelliemac, I had tears in my eyes reading your post, because it sounds like you and I are from the same mold. I don't know if I put in my original post that my twins are the result of four agonizing years of fertility treatments. I, too, have experienced loss, four miscarriages total, including the loss of Brigid, my baby girl whom I lost at 16 weeks to Trisomy16. Found out I was pregnant on New Year's Eve 2002, after I asked my husband to get me a pregnancy test ""just in case" because he wanted to have some champagne to ring in the new year, and my cycles had been erratic since stopping breast feeding the twins. What an amazing an ironic thing to get that "freebie," as we call it on my infertility loop, after trying so hard and so long. But we lost her, and although we do want more kids, I'm still trying to heal from this loss. My other losses were early, 5 and 6 weeks, and then I lost Mikkel and Saoirse's triplet sibling at 9 weeks. Your losses, however, were so much deeper, after feeling those babies inside you and bonding with them for months. May I ask if these losses were before or after losing your parents? There is a lot I could say about this but I will save it for another day...and if you'd like you can email me at jrneygirl@aol.com so we can talk a bit more.

Cindi, you seem to have such a wonderful way with words! And yep, you're right...my kids are, most of the time, a nice break from the serious nature of my mom's diagnosis. I don't know what I'd do without them...or my husband, who is such a wonderful guy to take my mom into our home without even a gripe or a grumble, because he knows how important she is to me. Thanks so much for your kind words, and I'll keep in touch!

Paddy, what can I say? Telling you I am sorry for your loss is just not enough. My mom can certainly relate to you, as we lost my dad in September, and with the holidays so close, it was hard for her to put a smile on her face, and things have not been the same since. I pray that each day is just a bit easier to handle for you. I was driving to the mall the other day and suddenly I took a right insead of as left and went to the cemetary where my dad and grandparents are. I sat in the car and cried for a good half and hour. I just hate going there in the winter.

Thanks again, everyone, for the warm welcomes, and I although I hate having to be here, I'm glad to have met such a great group of people.

[stand4hope]

Erin,

I was amazed to read your post about your miscarriages and your Trisomy baby. I am very sorry for all of your losses, but had to share this with you.

I, too, gave birth to a Trisomy baby boy that only lived for a short time after birth. This was in 1982. I also had 6 miscarriages before John was born after years of infertility studies, fertility drugs, etc. At the time I became pregnant with John, we had already adopted our son, Mike, who was 6 years old then.

We were shocked and excited to have this happen. It was a horrible pregnancy, though, and I was deathly ill and hospitalized for 2 months prior to his birth. I was too ill afterward to even attend his funeral.

Trisomy babies are very, very rare, and I was stunned to read your post. I have never known or talked to anyone else that had a Trisomy baby.

We were told that since it's genetic-related that there was a good chance that all of the previous miscarriages were probably Trisomy also. John tried to abort at 6 months, but we fought like crazy to keep him with Yutopar (sp?). The fight for the next 2+ months got worse every day and because I was having convulsions they had to take him by C-section four weeks early. Unfortunately, he had so many anomalies that he couldn't have survived under any circumstance.

If you want to talk about this at all, send me a PM so we don't get off-topic with your original post or the purpose of this site, but I would be interested in hearing more of your story.

Love,

Peggy

[ErinC1973]

Peggy,

What is your husband's name? When I sent the first reply, it deletes all of the sig lines so I couldn't remember everyone's diagnosis, but now that I see yours, I am just AMAZED at what your husband has been through! I see he's just had a new CT scan. Is there a new plan of action as of yet? What is the drug he took in conjunction with IRESSA?

As for the m/c, I am VERY sorry to hear about John. Actually, Trisomy babies are not as rare as some may think, as Trisomy 21 is Down Syndrome. Trisomy 18 is Edward's Syndrome. Trisomy 16 is the most common form of genetic abnormalities, and account for the majority of genetic-related miscarriages. My baby had full Trisomy 16 and would not have survived to birth; however, some with partial Trisomy 16 can survive, although most do not survive to adulthood. It just depends on the anomaly and which chromosome has the mutation. I have a friend who went to a genetecist after she had three chemical pregnancies and found out that she had an extra "x" chromosome, but that now they are finding that some women carry this extra "X" and don't know it and lead healthy, normal lives. She has since given birth to a gorgeous little girl.

I have actually had karotyping done myself to look for genetic abnormalities, which I demanded after my two early miscarriages, and everything came back normal. When I lost Brigid, obviously we had karotyping run on her. My reproductive endocrinologist suggests we run karotyping on my husband, but I honestly don't feel this is necessary since I have two healthy children. We are going to go back to the doctor soon to resume treatment (I've had 6 intrauterine inseminations and two in-vitro fertilizations, but my twins were conceived on just a medicated cycle) and although I know he may push for it, I don't want to go through any more genetic testing.

And yes, I'd be happy to talk about this more off the board if you'd like. You may email me at jrneygirl@aol.com anytime. I belong to two infertility groups, one which is moderated by reproductive endocrinologists, genetecists, and immunologists, among other specialists, and they have helped me understand a lot of this through the years.

[stand4hope]

Erin,

My husband's name is top secret. LOL! I promised him I wouldn't use his name on the internet. He is really doing very well, especially considering his advanced disease. He has two new brain mets we have to deal with, but other than that, he's doing great. Working full time and in good spirits. I posted an update on Friday. Here's the link: http://www.lchelp.com/community/viewtopic.php?t=13031

He currently isn't taking anything else besides Iressa, but he is receiving Zometa every 4 weeks for his bones. Zometa doesn't fight the cancer, but it increases the bones ability to prevent the cancer from affecting them. He receives the Zometa via i.v. It takes less than 30 minutes and there are no side effects.

Wow! You really educated me on the Trisomy. We were told there were three syndromes, one was Downs, one was Trisomy, and I can't remember the name of the third one. We were told that what John had was the most rare and babies usually didn't survive. We, too, had genetic testing done and I honestly can't remember what we were told. I don't remember what year it was done, but it would have been before John was born, so I'm guessing it was 28-30 years ago. I can't even remember what I had for dinner yesterday, so it's no surprise that I can't remember the genetic testing results. LOL!

Please keep us posted on how your mom is doing, and have a Very Merry Christmas!

Love,

Peggy