Treatment has FINALLY started!!

[Dona]

It has been 2 months since initial diagnosis and after extensive scans, bronchoscopy and multiple hand/arm vein pokes, I have FINALLY started treatment! Hallelujah and Amen!

I plan on posting weekly updates (diary) to help those recently dx'd get a general idea of what to expect and to also help me get through it. 

My situation is different than yours but many of these procedures/side effects will be common to others. I do this bc I am hungry for details of other's experiences to understand what to expect, and have found sometimes the  small details are not always imcluded in the posts. 

This first post is just a recap of my particular journey thru this damn health distraction,  up to 1st day of treatment.

My final dx from Guardant blood biomarker states lung adenocarcinoma.  However, my oncos cannot definitively tell me the ORIGIN of the mass :  localized LC or mullerian met from previous Stage 4 gyno cancer in 2000.  I was rediagnosed from SCLC to Stage III NSCLC about a week after biopsy.

Stage III only bc the main 6cm mass (increased from  5.7cm in 2 months) has satellite nodule -  absolutely NO lymph node involvement in lungs nor present on skull to knee PET.

I hope all the site "veterans ' share as well, as they have more 'experience' and every single one has helped me climb out of a gloom and doom state to becoming a positive fighter.

This particular post includes date of initial diagnosis and total nbr of subsequent diagnostics to get me where I am today.

I plan on posting each week's details (side effects and info rcvd by Drs/RN/Techs) that may be useful to others. So my first week of treatment will be posted this coming Sunday . 

Initial LC Diagnosis - July 15, 2021

Treatment Begins -  September 13, 2021

Blood draws : 7

Chest CT : 8 (includes CT w contrast to map radiation area and place treatment tatoos. My tatoos are permanent but are the size of a freckle) 

PET:  1

Bronchoscopy:  1

Biomarker (tissue/blood) 2

Brain MRI w and wo contrast: 1

Cancer Ctr used brand new 3T MRI which was pretty brutal for me  and I have a high tolerance for pain/discomfort - this MFer caused vertigo for me, was SO LOUD and seemed to last forever. The magnetic waves are double intensity of std MRI and you felt it.  No likey,  no likey.

RXs prescribed for home use

-Zofran/Compazine (for nausea) - per RN use Compazine only if Zofran ineffective 

-Lidocaine (for mouth sores - if needed)

==============

Day 1 - infusion ctr (1xweek x 6 weeks)

Low dose Taxol (1 hr)  Carboplatin (30 min)

Carbo given instead of Cisplatin bc of current kidney issues most likely caused by Cisplatin administered for gyno cancer in 2000

Hydration IV for kidneys

Benedryl IV - RN said it would sting when injected, it didn't bother me

Anti nausea meds - 2 ea Zofran/Compazine

Radiation (5xweek for 6 weeks)

Radiation has never bothered me and this particular day was no different. Treatment lasted about 15 min and included about 5 min of lining up previous mapping 'tatoos'

The only thing of note is that you are nude from the waist up and you're showing  your girls in all their glory. I am too old to care if a 25 year old technician sees my old ta-tas.

In ending, I actually feel good after Day 1 treatment, violent cough from this a.m. and extreme SOB are not present. However, I am not naive enuf to expect the mass is gone,  but I'll take a good day anytime. 

I will post again Sunday with the rest of the Week 1 side effects or other info you may find helpful.

I hope this little diary helps someone understand what to expect.  Your situation will most likey differ in the amount of scans/bloodwork, bc the Oncology Chair has labeled my case 'oddball' so more diagnostics were required.

Take care everyone.

Dona

 

 

 

 

 

 

 

 

 

 

[Rower Michelle]

Hi Dona.

Congratulations for getting the show on the road!  You’ve got a strong spirit and great sense of humor coupled with your previous cancer experience makes for the right mindset in the days and weeks ahead.  

[LexieCat]

Congrats! One tip on the anti-nausea meds (Zofran and Compazine). Don't take them till you start to feel nauseous. You don't want to wait till you're throwing up, but don't take them unless you feel queasy. I was taking them on schedule every day and got the worst constipation of my life. The nurse then set me straight. Eventually I was taking only one or two (if any) per infusion. You might want to have some Miralax on hand, just in case.

 

[Judy M2]

Dona, you are getting the same exact treatment as I did. After about 2 weeks, fatigue from radiation may set in. It's temporary and should go away in time. Protein helps. I used Biafene lotion after each radiation treatment and had only a painless sunburn on my back. 

You are very lucky that no lymph nodes are involved. My lymph nodes were right on top of my esophagus, and radiation gave me a wicked case of painful esophagitis. 

Pay close attention to constipation and I'd recommend taking Miralax proactively. The alternative can be serious. 

The Benadryl in the infusion might make you sleepy and you can get a nice nap in. Bring a blanket, snacks, water, a book and headphones and you'll be all set. Infusions are pretty boring. 

You didn't say if you'd gotten a port but I highly recommend one. It can be used the same day it's placed. 

Be prepared for some hair loss. I shaved my head when it started to fall out. I used cute headcovers for a long time. My hair took a very long time to grow back in. 

If you have pain, consider a palliative care doctor. Mine was a lifesaver. 

Good luck with treatments. They were effective for me even though I had a really rough time of it. 

[LexieCat]

Oh, yeah, ditto on the port. Your veins will thank you. 

 

[Tom Galli]

Dona,

Good job on your post. Your detailed chronicle will help many in the future.

Ditto on the port and double ditto on Miralax!

Stay the course.

Tom

[Dona]

14 hours ago, Rower Michelle said:

Hi Dona.

Congratulations for getting the show on the road!  You’ve got a strong spirit and great sense of humor coupled with your previous cancer experience makes for the right mindset in the days and weeks ahead.  

Thx Michelle! We'll see how upbeat I sound as the weeks progress, lol.

 

[Dona]

13 hours ago, LexieCat said:

Congrats! One tip on the anti-nausea meds (Zofran and Compazine). Don't take them till you start to feel nauseous. You don't want to wait till you're throwing up, but don't take them unless you feel queasy. I was taking them on schedule every day and got the worst constipation of my life. The nurse then set me straight. Eventually I was taking only one or two (if any) per infusion. You might want to have some Miralax on hand, just in case.

 

Lexie, were u taking them together? I was told to only take Zofran, and if it was ineffective to then take Compazine. Thx for the feedback will invest in some Miralax!

[Dona]

12 hours ago, Judy M2 said:

Dona, you are getting the same exact treatment as I did. After about 2 weeks, fatigue from radiation may set in. It's temporary and should go away in time. Protein helps. I used Biafene lotion after each radiation treatment and had only a painless sunburn on my back. 

You are very lucky that no lymph nodes are involved. My lymph nodes were right on top of my esophagus, and radiation gave me a wicked case of painful esophagitis. 

Pay close attention to constipation and I'd recommend taking Miralax proactively. The alternative can be serious. 

The Benadryl in the infusion might make you sleepy and you can get a nice nap in. Bring a blanket, snacks, water, a book and headphones and you'll be all set. Infusions are pretty boring. 

You didn't say if you'd gotten a port but I highly recommend one. It can be used the same day it's placed. 

Be prepared for some hair loss. I shaved my head when it started to fall out. I used cute headcovers for a long time. My hair took a very long time to grow back in. 

If you have pain, consider a palliative care doctor. Mine was a lifesaver. 

Good luck with treatments. They were effective for me even though I had a really rough time of it. 

Judy, yes the Benadryl did make me a bit drowsy, but stayed awake. Might nap on the next one. Thx for the input on Miralax,  will invest in some. 

I do not have a port, I was born with big fat ole ugly veins perfect for chemo. I will only need to get stuck 6 times (hopefully).

Also thx for input on hair loss. Onco said it would thin only, but have been curious about that. I've already mentally prepared for a shave so wont be shocked. I did lose all my hair in 2000.

Dona

[Dona]

11 hours ago, Tom Galli said:

Dona,

Good job on your post. Your detailed chronicle will help many in the future.

Ditto on the port and double ditto on Miralax!

Stay the course.

Tom

Thx Tom, will be ordering Miralax today!  As for the port, will be passing on that only bc of my "ugly chemo veins" I was born with. 

Dona

[LexieCat]

10 hours ago, Dona said:

Lexie, were u taking them together? I was told to only take Zofran, and if it was ineffective to then take Compazine. Thx for the feedback will invest in some Miralax!

No, I was taking only Zofran. After the constipation, though, I was advised to take Compazine instead because it was less constipating and to take the Zofran only if the Compazine didn't work.

And just a heads up, you will also be having lab draws and getting contrast for scans. Most hospitals/cancer centers will use a port for that, too. Also, chemo can cause damage to the veins. Some people do manage without a port, but I'm sure glad I have mine.

[LouT]

Dona,

Thanks for the details...this will help others.  And know that we are all with you as you go on this journey.  Stay strong, you already have that warrior spirit.

Lou