New to the Forum!

[11Amber11]

Hello all,

My name is Amber and I was diagnosed in October last year after “pulling a muscle” in my back.  Turned out to be broken ribs caused by mets from Lung cancer (primary tumor in the R upper lobe with spreading to lymph nodes and bones such as the ribs, spine, pelvis, thighs, scapula).  The neck of my left femur was almost eaten through so I had surgery the next week to put a rod in my thigh.  No rehab!!! I realize I should have gotten rehab as i didn’t move enough after the surgery and lost so much of my range of motion and flexibility.  (I’m certified in yoga and now I can’t hardly even lunge!)  

 I got a second opinion and a referral to MDAnderson for a clinical trial of Poziotinib.  I started it over Christmas last year ( i should have waited) and dealt with the side effects until Feb when a scan showed a lot of progression.  It unfortunately didn’t  work for me.  I started carboplatin/alimta/keytruda in March and had several scares with fevers etc right when Covid was gearing up.  Absolute insanity.  A UTI and infected port later I changed oncologists for the third time (it was a crazy roller coaster of a ride with oncologists oct-may).  Things finally settled down and I got on track with my maintenance infusions of Alimta & Keytruda.  I started having severe flare ups of an arthritic nature and they became more and more frequent over the summer.  I tried OT/PT but it just helped get around the pain.  I saw a rheumatologist and was prescribed steroids which knocked out the inflammation and nerve pain (from arthritic symptoms from keytruda such as swollen joints).  I felt like million dollars the first week or so. I was then given Methotrexate to build in my system as we started to decrease the steroid.  I feel pretty good physically except after my Alimta  infusion.  It takes a few days to recover but it’s waaaaaay better than what I’ve previously gone through,  So now I look at my life and sigh.  I withdrew my kids from school as “distance learning” did not work for us.  My husband hides in work and alcohol as he has always done and I’m trying to find the spiritual significance of all of this.  I’m not Christian but live in a very conservative/Christian area.  I’ve finally found counseling for the kids and myself but am struggling with the idea of staying with my husband.  The life I have left I want to live for me.   But that’s a big leap and I’m trying to find the courage to do it in the middle of this madness.  Sorry, not a feel good uplifting post but it’s a nutshell of the last year.  Thanks for reading and I’m happy to find a place for support and information.  Have a great week:)

 

Amber

[GaryG]

Hi Amber: I am glad you joined us and sorry you had to do it under less than ideal circumstances. If I am not wrong we have another patient who was a yoga instructor before they had lung cancer. There are many of us on the same regimen as yours (Carboplatin, Alimta and Keytruda) and moving on to the maintenance phase of Alimta and Keytruda. We call that infusion Triplet and you can find many posts in the Chemotherapy section discussing the triplet and  its side effects. Could you please explain what effect did the triplet have on your cancer. Did your CT scans show progress?   How long have you been in the maintenance phase of Alimata and Keytruda?  Did you have any radiation or surgery?  Did you have Biomarker Testing and if so do you have any mutation? 

 Sorry to see that you have family problems when what you really need is family support. Hopefully we can provide you with plenty of support since our members have the knowledge and experience to answer your questions and make feel comfortable.  Again welcome and looking forward to see you post more often.   I wish you the best.

GaryG

[TJM]

Amber

What a tough journey you have already had. If I read you correctly you are feeling better now and the chaos is over. I hope that is true.

As for your other issues, I can only offer some sympathy. I am blessed with a very supportive wife and 2 awesome sons.  In my opinion there is nothing wrong with you following whatever path will bring you the most happiness.  Cancer really is a lonely disease and you have to be your own advocate and champion.

I wish you the best

Peace

Tom

[Susan Cornett]

Amber - 

Wow - that is a hell of a lung cancer path but it does sound like you've got the right combination of meds and oncologist. I'm sorry that you aren't getting the support you need from your husband, but hopefully we can be here for you. You might be interested in the Lifeline program as well.

Keep us up to date and let us know how we can help you.

 

[Tom Galli]

Amber,

Welcome here.

You've had a tough slog thus far treatment wise. And, you've experienced the difficulty of living with lung cancer. Life, it seems is complicated; living with this disease takes complication to a whole new level. None of us here can offer solutions but we can offer experienced-based support. We've been there and done that, and our experience may provide insight.

While in treatment, I faced many life-related challenges. I tried to tackle them all and failed miserably. I learned I had to prioritize and deal with some and ignore or let someone else deal with others. Funny, those that I ignored managed to get sorted out without my attention, and these complications were driven by outsiders (well meaning family, friends and work). First for me was treatment; everything else took a necessary back seat.

I do hope your treatment takes hold and arrests your lung cancer. I also hope you find peace.

Stay the course.

Tom

[Judy M2]

Hi Amber, I was also diagnosed in October 2019 and had a rough journey. Mine was different but I can sympathize with what you went through. It sounds like you are in a better place now in terms of your treatment. 

Both my husband and I have had close alcoholic family members. It was difficult enough for me to cope with mine while I was healthy, so once I was diagnosed, I made the choice to eliminate my family member from my life to a great extent. It was imperative to reduce my stress level, and I think I've done that. Of course, you have minor children to consider, and it may actually increase your stress to change your life at this point. Divorce is extremely stressful no matter what (I went through one in the 1980s). I hope you'll find a solution that works for you and your children and allows you to focus on your well-being.