Update from Zimbabwe

[Zimbass]

Hi All,

Michelle did contact me privately, as she was aware of my wife's Facebook post. 

I had a six week check up from starting the Targeted Therapy, and discovered that the Ceretinib had not worked for me, and the tumor had doubled in size. Have been put on a 3 week break to allow my liver to recover, as it had been severely compromised. Have been prescribed Lorlatinib as a new treatment, which I still have to find, as it is not available here in Zimbabwe, or South Africa. My pharmacist is looking to the UK for this.

It has been such a blow to the confidence I had built up, especially from other ALK+ people on this forum. Not sure that a 5.2 cm tumor is any easier to shrink than the larger 10.7 cm one it has grown into to. Just think the treatment might just take longer than it would have.

I am now on Morphine for the Bone Mets. It does not take the pain away, but does make me feel like I am better able to manage the pain. 

Not where I was hoping to be, but do know that everything happens for a reason. Just have to keep the faith.

Best to you all.

Terry.

 

 

[Scruboak]

Terry, my heart is with you. Keep the faith, indeed.  Suzan

[MBinOregon]

Terry,

Sorry to hear your updates - it's always so sad to read any updates like this on this forum... I think you know what I mean.  I applaud your keeping faith 👍 and I'm cheering for you from far.

I hope you/your pharmacist get access to Lorlatinib and I pray that it will be an effective treatment for you.🙏

Sending warm thoughts,

MB

[BridgetO]

Hi Terry,

I'm sorry to hear what you're going through. Has radiation been considered for your bone mets? My mom had radiation for bone mets from breast cancer and had good pain relief from it.

I wish you all the best,

Bridget

[Zimbass]

Hi All you Good People,

I appreciate all the welcome good wishes. For those who have the faith, there is such hope when the Lord is asked.

There would appear to be a problem sourcing Lorlatinib, and the Joburg oncologist is recommending IV Chemo. 

Wanted to ask those with experience, as to the success of Chemo with ALK+. Also, is immunotherapy  an option ? Read somewhere that ALK+ does not respond to immunotherapy. 

Bridget O, Radiation has been considered, but would need to be targeted radiation, which is not available here in Zimbabwe, and the lockdown does not permit travel to South Africa.

Hope you all recovered, or recovering from the BEAST and getting to enjoy life again.

Best regards,

Terry.

 

 

[Rower Michelle]

Hi Terry, 

Cancer sucks.  Bottom line.   I was thinking about you in church the other day when we were studying the book of Matthew (19: 25), with God all things are possible.  Keep the faith! 

I imagine you're going to spool up the Alimta maintenance chemo.  I've met many people with ALK that started this regiment pre-inhibitor discovery on Alimta and got years out of it.  I had  one dose pre-inhibtor while waiting for the biomarker tests to come in.  I did have a response after one treatment. 

As for immunotherapy, well that's a different ballgame, for some unknown reason, the immuno doesn't work with ALK.  ALK is very sneaky, it hides in healthy cells making it difficult for the immune system to recognize it.   

For some reason, there is a small percentage of people with ALK that the inhibitor doesn't invoke a response.  It's not the end of the road, but a different path forward.  We pray for you and Sherry each night.   Keep fighting, we're with you. 

Michelle 

[Zimbass]

God bless you all, for caring and for having the faith.

I'm going to keep fighting.

Best.

Terry.

 

[G.A.M.]

Sorry to hear about this setback, @Zimbass. But that's all it is. Onward and upward. 

Best,

Glenn