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TiffsMom

Daughter age 26, has NSCLC

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Although I have been reading here for quite some time I have not posted until now. I had hoped that my daughter would be the one to post here and ask her questions but it seems she does not have the strength.

Her doctors tell us that they have never seen a case like hers- first being diagnosed so young, as a non smoker with NSCLC adenocarcinoma and then finding it had already spread to her Brain, liver and bones. If anyone else has heard of this in one so young please let me know.

She has WBR first and then Carboplatin and taxol. Then when the cancer was still growing very rapidly in her right lung- radiation. She developed a cancerous plueral effusion (please excuse my spelling) and had a chest tube for about 3 months - that has mostly cleared up and the tube was removed in march. Then Taxotere was started- every 3 weeks alnog with decadron. At first she had lost weight but with the decadron she began to gain apx. 10 lbs per week at first. She had headaches and an MRI showed the brain mets were back (after having virtually disappeared. After another 10 days of WBR she had several weeks where she was energetic and seemed back to her old self.

Then the headaches and neck pain started. They did more radiation to her lumbar and cervical spine. The pain continued along her spine and this required a spinal tap- they found cancer and elevated protein and a pressure of 34 (15-20 is normal). She had spinal fluid removed to lower ther pressure- then two weeks ago they injected depocyte into her spine. Today they will repeat that chemo procedure again. She has a great deal of pain and is on fentanyl, dilaudid pump and oxycodone. She has also had some blood clots in her calves during her recent 16 day stay in the hospital. If anyone has any suggestions or similar experience please let me know.

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Your daughters story just breaks me heart. I'm so sorry she is going though this, that you, as her mother are going through this. I can't address your specific situation, but know that you are in my prayers and that we welcome you here. Let your daughter know that she now has a whole internet crew rooting her on. We'll do what we can to help and support you both.

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Tiffsmom, I'm sorry I do not have any suggestions. I just wanted to say that I am very sorry this is happening to your daughter. I know it is every parents nightmare to see their child suffering and to be unable to help. Prayers that things start to look better for your daughter and that you and your family find some peace.

Karen

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Welcome to the boards. I can't begin to tell you how sorry I am that you are here under these circumstances. As a mother of two 24 yr olds and a 28 yr old, I can't imagine the pain and heartache you are going through. Please stick around for the support these boards offer.

I don't have any experience with someone so young, however just last week I spoke with someone who had a sister diagnosed with NSCLC at the age of 26. It was a crushing blow to her family too. I was stunned to hear of her age, but I guess this is happening more often now. Have faith and know God has a plan, even if we don't "get it".

God bless you, your family and especially your daughter.

Welthy

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Oh, this is so incredible -- Tiff is so, so young to be having this problem. We have people in their 30'd and 40's, but this is new for me. It sounds like the treatments they are giving her are the usual ones so far. I do hope she has some good times soon. My wife is also a nonsmoker -- we are seeing more and more of this. Don

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Very sorry for your enormous burden.

Yes. I knew a woman who was in her 2nd year of college who died rather quickly after diagnosis from lc. Her older brother is now a pulmonologist. Her grandfather was convinced it was from 2nd hand smoke from her college classmates.

We are here to help both of you through this tragic illness.

Cindi o'h

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Welcome. I am so sorry to hear about your daughter. I am afraid to say that lung cancer does also strike the very young and because it has no early symptoms it can be advanced before it is diagnosed.

Please read David P 's story under "My Story" . He was only 20 years old , in college, when he was diagnosed in 1977. He is a one lunger who rides in bicycle races!

Please keep us posted on how she is doing. Where are you located? Have you got a large cancer center? Sure would want the most up to date doctors working on someone so young.

Donna G

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I add my sincere regrets for what your daughter and you have to deal with. I can't add much for experience, but I am so very sorry that she has this dreaded disease, that she has to deal with the pain , etc.

My prayers are with you.

Mary

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Hi Tiffsmom. I am very sorry that your daughter has lc. It must be awful to countenance your daughter's suffering. My youngest daughter is 22. I sincerely wish that Tiff can find the right balance of treatment to hold the lc at bay indefinitely.

Don M

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Tiffsmom,

I'm so sorry to hear about Tiff's struggles at such an incredible age! He age is her most valuable asset when it comes to this battle. Sounds like you need the right kind of chemo to make it all happen. Have you had her looked at by another doc?

Please keep us posted! We're all here if you need us. She's in our thoughts and prayers!

Darrell

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Hi Tiff's Mom,

I am so sorry about your daugther. It is just so wrong and so unfair when this happens to anyone, and especially someone so young.

My husband was diagnosed at 31, with mets already in his lymph nodes and liver; stage IV.

He too was the youngest patient with his cancer type ever seen at any of the hospitals we visited, which there were 6 of them including the Mayo Clinic.

He had a very rare and aggressive fast growing cancer and was given 9 months to live. He survived for 3 years 3 months and 7 days.

I wish with all my heart I could give you words of optimism and encouragement, but I am too close to my pain right now. So, I will just tell you how important it is to never give up, research research research, try all the doctors and special centers available and find that one treatment that works like magic for her.

I will be praying for your daughter and for you.

Carleen

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Guest nonni

Hi Tiff....I am so very sorry for your daughter and for you too...this has to be devastating for both of you...but remember what the wonderful people on this board has to say....some with very serious problems are still doing fine....Please accept my thoughts and prayers....God Bless you all...PamS

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TiffsMom,

Like many others I am so sorry about your daughter, it just isn't fair. Can you tell us more, such as where exactly is she getting treatment, were there any other options given to you? Perhaps there may be somewhere out here who may be able to give you some information. With your daughters age, the oncs. perhaps want to take more chances w/ treatment, ie. more agressive. I know that w/ my husband, he still is pretty young for his type of cancer sclc, but overall pretty healthy, so they keep on throwing everything at him, of course it is at a high risk, so it is risk vs. benefits. Please keep in touch.

Grace

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Thank you all for your reply's, concern's and prayers. For those who wanted to know she is being treated by cancer centers of the carolinas, in Greenville, SC (where she lives with her husband). Her doctors consult with Duke University.

I also forgot to mention that her doctor started her on Tarceva after diagnosis and she tried it for a month but the cancer continued to grow. The strangest thing was that she had no symptoms except a cough and pain on her right side when diagnosed. She had been treated with antibiotics because her GP thought it was a bronchitis infection.

We appreciate all the prayers and have hundreds of people actively praying for her. Her spirits are good and she is still very positive despite all the pain and invasive treatments she has had to endure. She is a very special young woman and I rack my brain every day trying to figure out why and how this is all happening to her.

She has a wonderful, caring and supportive husband who is her primary care taker. Her friends and family have all rallied around her for support and she never forgets to thank all of them for this. She calls herself blessed to have such a big support group and has said that when she gets through this she wants to help other young adults who have cancer.

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Tiff's Mom

Like the others, I am so, so sorry to hear about your daughter's diagnosis and esepcially at such a young age. I have 4 children, all in their 20's, and can't begin to imagine what she and you are going through. She does sound like one special young lady. As others have said, keep asking questions, research and always keep the option open of going for a second opinion. You can't lose on these.

I will keep Tiffany and your family in my thoughts and prayers.

gail p-m

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Hello Tiffsmom,

Wow, Tiff sounds like an incredible young woman. I am so sorry she is faced with this horrible disease at such a young age.

I am very glad that you have begun posting here, though. As you can tell from all the replies so far, there are many, many wonderful and caring people on this site who will be more than willing to help answer your questions and provide information and encouragement. You could never ask for a better group when it comes to finding support, love and care!

You and Tiff and your entire family are in my thoughts and prayers,

Chris

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Hi,

Sorry to hear this news about your daughter. She does have her age in her favor. What I mean by that is she can be treated very aggressively. Taxol/Carboplatin is 1st line chemo along with radiation. She needs to keep a positive attitude.

It sounds like she has a good medical team and they are giving her the right treatment. To have peace of mind, it is not unusual to get a second opinion. Independent of the first one.

Please keep us posted and know she is in my prayers also...

God Bless and hugs,

karen

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Oh My Goodness! What a wonderful young woman your daughter must be and so sotrong and brabe too. I am so very sorry she has to go through this. My prayers and positive thoughts go out to you all. Paddy.

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Good Job on getting Duke on board excellent facility Oh yes I am in greensboro NC Got to show the blue devils a little love. Any thoughts about clinical trials? May want to ask about possibility. There is also great facility and staff at Wake Forest Med center Winston Salem NC. Let us know about previous treatment regiments. this group is awesome at research. Also at sending prayers like I am sending now for you all.

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Tiffsmom,

This disease has not ceased to amaze me yet. 25 at diagnosis is just so young. This hits pretty close to home for me since I am too 25.

You definitely found the right place to find guidance, voice your concerns or just vent. The response of this forum is unbelievable.

I definitely agree with going for a second option cause you never know what another onc has to offer.

Best of luck to you and your family.

Shirley

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Oh, I am so sorry to hear about your daughter. SHe is so young, and I know how hard it's got to be on both of you. I am 27 now, but was diagnosed last year at 26 with a rare and very aggressive type of cervical cancer which seems to strike young women especially. I joined these boards because my cancer--small cell--behaves and is treated like small cell lung cancer, and so I thought I might find more info and support here. It is a great place to be for support and information and I am inspired by the stories.

Is Tiff getting adequate pain control with her current pain meds? I do hope so.

Please keep us updated. I'm wishing for this best!

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I am so very sorry for what you and your daughter are going through. I cannot imagine having one of my children sick. I hope they come up with the magic bullet soon and get her cancer stabilized. Keep us posted on how she does.

Rochelle

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