Wife Dx Stage IIIB SCLC January 28th, 2020

WifeSCLC
WifeSCLC Member Posts: 3
in Lung Cancer #1

Hi all ... am new to this forum and wanted to introduce my wife's cancer.

My wife (age 62) was dx with stage IIIB (T4-3, N2, M0), small cell lung cancer on 1/28/20 after hospitalization for critical low Na (113) and critical high blood pressure (198/??) on 1/24/20. Various scans (X-ray, CT, MRI, PET) concluded 6.1x5.5x5.0cm primary mass in left lung, encasing the pulmonary artery with SUV of 17.5.  Metastasis occurred in several mediastinal nodes (believe 2 nodes).  Her 1st chemo cycle (1 of 4 or possibly 6) began 1/31/20 while in the hospital w/ carboplatin + etoposide.  Radiation would be deferred to 2nd chemo cycle as outpatient.  Treatment w/ carbo was due to liquid restrictions as a result of low Na.

Her 2nd chemo cycle began on 2/25/20 (her birthday-now age 63) w/ cisplatin + etoposide and concurrent with 1st of 30 radiation treatments.  Cisplatin will be used for all further chemo cycles, every 21 days.  Chemo port was installed for 2nd cycle.

Her symptoms to date are nausea (during and few days after chemo); consistant fatigue but gets better before next chemo cycle; throat soreness and some sores (several days after chemo for a few days); consistant throat roughness and feeling of knot in throat (began a few days after radiation); ringing in ears (began after radiation); and most recently, severe drop in blood salts (pills and IV treatment administered).

Currently, I'm looking for advice on prophylactic cranial radiation (PCI) which may occur soon after her 4th cycle of chemo.  Specifically, I am hoping someone has had hippocampus-avoidance PCI (HA-PCI).  Both my wife and I are very concerned about any additional memory loss.  She currently has some memory issues and we may seek guidance on dementia.  There is some information on HA-PCI but very little outside clinical trials.

I will try to provide key updates to my wife's treatment for others that may follow with the same diagnosis and treatment.  My hope is that we won't have to worry about 2nd-line treatment ever but understand that recurrance is very likely.

Thx for your time ... Steve

Comments

  • jorola
    jorola Member Posts: 243 Member
    edited March 2020 #2
    Sorry, i do not have any experience to share.

    But I wanted to wish your wife and you all the best.

    I do have one question - are you sure it is small cell and not non small cell? Just checking. Small cell used to only be graded as limited ot extensive but now they seem to be using the same stages as they do for non small cell. It can get confusing.

    Regardless all the best to you both and may she respond well to treatment.

  • WifeSCLC
    WifeSCLC Member Posts: 3
    edited March 2020 #3
    jorola said:

    Sorry, i do not have any experience to share.

    But I wanted to wish your wife and you all the best.

    I do have one question - are you sure it is small cell and not non small cell? Just checking. Small cell used to only be graded as limited ot extensive but now they seem to be using the same stages as they do for non small cell. It can get confusing.

    Regardless all the best to you both and may she respond well to treatment.

    Yep ... Small Cell

    I asked my wife's onc the same thing ... small cell is now being staged using the non-small cell vernacular.  I found some literature that said the same thing.  Not that non-small cell is a good thing but would have preferred it ... SCLC is too darn agressive.  It just "feels like" you don't have time to make decisions! I did contact the NCI cancer hotline and they are looking for information on hippocampus-avoidance PCI for me.

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