Jump to content

26-year-old boyfriend passesd away tragically !


Gina11

Recommended Posts

Hello everyone, I've been lurking these forums for a little bit and decided to join. My 26-year-old boyfriend was diagnosed in October with stage IV NSCLC, primary tumor in mediastinum (12 cm, covering entire upper lobe of his right lung.. it was huge) with bone mets to L3 and L5 on his spine, mixed adenocarcinoma and squamous cell carcinoma. It all started with him having severe back pain along with some coughing and shortness of breath. His back pain ended up getting so severe that he went to the ER.. when they x-rayed his chest they realized that his right lung had almost completely collapsed (it ended up collapsing completely) and then after doing a CT scan on him, realized he had a 12 cm tumor in his mediastinum. He also ended up developing superior vena cava syndrome from the tumor pushing on his SVC, impeding blood flow to his heart and causing his heart to beat too fast. He was in the hospital for almost 2 weeks.. they couldn't release him until they could remove his chest tube and his vitals normalized.

When he was in the hospital, they first told us he had stage IV lung cancer.. then turned around and said he probably had testicular cancer. I was so relieved because testicular cancer has a much higher cure rate than lung cancer. I'm not sure why they had such a tough time figuring out what kind of cancer he had - cancer cell pathology should be pretty cut-and-dried. However, shortly before they released him from the hospital they told him he did have "some form" of lung cancer (gotta love vague doctors). They started him on chemo and chest radiation in the hospital immediately, even before they were sure what kind of cancer he had. I guess it took them so long to dx his lung cancer because it was so unlikely that someone his age would have lung cancer.. but it does happen. :(

Chris is doing better though - he will be receiving his 4th round of chemo (cisplatin and taxotere) next Tuesday (12-6-11). I think they want to do between 4 and 6 rounds of chemo - preferably 6. He also had 10 radiation treatments to his chest which burnt his esophagus pretty badly.. he could barely even drink water for almost 2 weeks because it was so painful but that has healed up great. The CT scan he had on 11-10-11 showed that his chest tumor had shrunk over 50% - from 12 cm down to 4.3 cm!! His oncologist also said his lungs look great. However, he also said that it looked like his spinal lesions had increased in number, which we thought didn't make sense because his back pain has gotten so much better - he was in total agony when he was in the hospital and right after he was discharged from the hospital, his back pain pretty much went away. In the past 5 days or so, he's been getting weird pain in his arm (pain that seems to jump around, from his upper to his lower arm, which is odd - if it were a bone met you would think the pain would be only in one place) and more back discomfort so I'm pretty worried about that. His oncologist is already looking for clinical trials he may qualify for in the event his current chemo protocol isn't working as well as we would like.

It's been just a little over 2 months now since this unwanted journey began.. it seems like it's been the longest 2 months of my life. We had only been dating since July when everything happened, really hit it off perfectly, fell for each other very hard and then to find out Chris has stage IV lung cancer was absolutely devastating to me. But God's timing is always perfect and as hard as this has been for me emotionally, I know that I was meant to come into Chris' life at this particular time because I know he needs me. I know the statistics for stage IV lung cancer but I do believe in a miracle for him. And Chris is just so amazingly positive about everything, he said from the very beginning, ever since he was first diagnosed, he's just not been very worried about it.. he knows everything is going to be okay and that something good is going to come out of this. I probably worry more about him than he himself does!

Anyway, sorry this was so long!

Link to comment
Share on other sites

It is good to see that he has a great Oncologist looking out for trials!!! Welcome aboard here and keep posting up on everything going on for him!!

Link to comment
Share on other sites

Hi Gina,

Welcome to LCSC,I am so sorry to read of your boyfriends situation.I am glad you have found this forum,it has helped me so much in being able to cope with my lung cancer .Everyone here is so supportive and encouraging,I am sure you will benefit so much by being here.

I think it took me about six months to settle my nerves and come to terms with my cancer,then gradually I began to find some confidence to believe I actually had a future to look forward to.

Your boyfriend really has gone through the mill over these last two months,both physically and mentally.I am so full of admiration for him,for the way he has coped with his journey so far and has kept up such a positive attitude.

I can appreciate how hard this is for you also,I wish you both well as you face this challenge to-gether,it isnt easy,but it can be done,there are so many survivors here with a whole variety of lung cancers and different stages, doing well,not just surviving but thriving.

Sharing with your new family of buddies here,you need never feel you are facing this alone.

Link to comment
Share on other sites

Hello Gina, Welcome to the place noone wants to be. Sounds like your boyfriend is a real fighter. His positive outlook will carry him far in his fight. I too had a spine met. It caused pain in places that were nowhere close to the tumor. The nerves were pressured by the tumor. Now that his has shrunk from 12cm to 4cm, wow that's a big relief. There are numerous options coming your way. Stay strong and be kind to yourself through all this. A caregiver's role is critical and you have to take care of yourself first. You guys are going to be OK.

Link to comment
Share on other sites

Gina - While I'm so sorry you had reason to find this place, I'm glad you did as the members here are so supportive and helpful. This disease is just horrible at any age, but I can't imagine what it must be like to get this news so young. Chris sounds like he has a great attitude, which is so important. It sounds like the two of you make a great team. I will be keeping you and Chris in my prayers. Please let us know how you are both doing.

Diane

Link to comment
Share on other sites

Gina, good for you standying by Chris wiith his dx so early in your relationship. You know some people would have run screaming. He is lucky to have you.

You say you've been lurking awhile so you know us. We're good people and we're here for you and Chris every step of the way. Keep us posted.

Judy in KW

Link to comment
Share on other sites

  • 1 month later...

Got busy with the holiday season and forgot all about posting here. Since I posted, Chris received his fifth chemo treatment (#4 of Cisplatin & Taxotere). His back pain returned suddenly and it was pretty severe. He's also been having worsening pain in his right arm and also pain in his right ribs as well. He had 15 radiation treatments to his spine which he completed the week before Christmas.. because the radiation is shot through his stomach to his spine, it messed his stomach up for a few weeks (decreased appetite, nausea, etc.) but that seems to be resolving. He still has random bouts of nausea/vomiting (seems to usually happen after car rides or eating certain things though).

His oncologist ordered a bone scan due to the new pains he's been having despite all the chemo he's received and it showed that his bone mets are more extensive than we thought. He has mets on his skull bone above his frontal lobe, both upper arms, both sides of his ribs and both thigh bones. His onco had his pathology retested and it showed that his lung cancer is 90% adenocarcinoma and 10% squamous cell.. and he isn't certain but he told us he has a theory that's perhaps why the Cisplatin & Taxotere aren't working as well as they should be for the bone mets. So on Tuesday 1/17/12, Chris is going to start on Alimta every 3 weeks, which is more targeted towards adenocarcinoma (they don't typically give it to people with squamous cell lung CA). His onco is also trying to find clinical trials that Chris may qualify for. I emailed Chris' oncologist yesterday to ask him if he had checked for clinical trials at Moffitt Cancer Center in Tampa (which is pretty close to us) and he said that he had just found a clinical trial that's testing Alimta in combination with another new drug and he's waiting for a response from the trial coordinators. I'm praying hard that he can get into this trial. Chris and I are still believing that God will heal him - we don't know what way, when or how but we still believe that and pray for it every day. I was hoping for better news with his bone scan - it really upset me hearing that his bone mets are more widespread than we knew but I know that now, more than ever we need to hold fast to our faith and trust that God has got this!

jaminkw - I don't believe in luck. :-) We are both very blessed to have each other. It's kinda funny, on days where I'm feeling sad/down, he's upbeat and positive and vice-versa. It's like we always balance each other out, I know it's God giving us the strength and courage to keep one another uplifted.

If there are any stage 4 survivors, especially younger people, please PM me. I'd love to get in touch with you. I have one local lady that is an 8-year stage IIIB, NED survivor that I talk to on the phone who is a huge lung cancer research advocate and she's great. I'm not sure how old she is but I think she's over 50. I actually found her because I heard her on the radio late one night advertising for a local 5K run/walk lung cancer research fundraiser and telling her story.. I don't think that was coincidence that I happened to hear her that night!

Link to comment
Share on other sites

Hey Gina,

Sorry to hear about the everything you two are going through and I am praying that the oncs. can get the pain under control..

Has Chris had any genetic testing done to see if he may qualify for any of the targeted therapies that are out there?

Blessings,

J-me

Link to comment
Share on other sites

  • 2 weeks later...

Well, his oncologist has decided to cancel the Alimta because he thinks Chris' cancer is getting worse, he's been having a lot of trouble with various pains and has 2 visible bumps above his left eye that look like bone mets on his skull (we're not sure though) and have been making his left eye swell up. He only got 1 dose of the Alimta and was supposed to get another on 2/7.

His doctor found 2 clinical trials he may qualify for, one up in Jacksonville sponsored by Mayo Clinic and one at MD Anderson in Houston, TX. Obviously Jacksonville is a lot more accessible for us, the trial in Houston is only in phase I/II and we would have to pay out of pocket for travel/lodging (and his oncologist wasn't even 100% sure he would qualify for it, he'd have to go out there and get assessed by the docs out there I guess). Mayo Clinic in Jacksonville is supposed to call Chris within the next 3-5 days and set up something. So I guess now the only options are clinical trials. We just need to pray about it and figure out what God wants us to do.

You all might think we are crazy but we are still believing that God has a plan for both of us and trusting that He will heal Chris, we just need to walk in faith a little while longer.

Yes, Chris has been tested for the gene mutations and doesn't have them.

Link to comment
Share on other sites

Chris was voluntarily admitted to the hospital this evening to try to get his pain under control as the oral morphine & Fentanyl patch he's on are not holding him. He's having very severe neck/back pain tonight so please pray for him. Pray for me too so that God can continue to give me the strength to be strong for him. It's so hard seeing him in so much pain, it just breaks my heart.

Link to comment
Share on other sites

Thank you, he is doing better this evening, they got him a PCA morphine pump and it seems to be more effective than the IVP Dilaudid. Not sure when he may be getting out of the hospital, the pain management doctor has to figure out some kind of setup he can go home with I suppose.

Link to comment
Share on other sites

Gina, the tone with which you write conveys the love you have for Chris. The best thing you can have going for you, as a cancer patient, is someone to love and support you.

Don't forget to take care of yourself, too. Too often our caregivers think only of their sick loved one and don't watch after their own health.

Best wishes

Jessica

Link to comment
Share on other sites

  • 2 months later...

Chris passed away on March 9. Ended up being admitted to Moffitt in Tampa when we went there to see about a clinical trial.. ended up having spinal cord compression from tumors on his spine, had 2 surgeries for the compression & surgery for placement of Pleurex catheters on each side because he kept filling up with fluid in his chest.. he was in ICU 2 weeks & fought very hard.. but his disease progressed even in the 2 weeks he was at Moffitt. His cancer was extremely aggressive.

Link to comment
Share on other sites

Condolences to you and family and friends of this brave young man. I am so sorry and if we can help you through this hard time we are always here!

Link to comment
Share on other sites

Gina,

I am so sorry to hear of Chris's passing,I have so much admiration for you both in the way you fought this disease to the very end,I just wish things could have turned out otherwise.Please accept my deepest sympathy,may you find,love,peace and joy for the rest of your life.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...