Jump to content

Just diagnosed


Recommended Posts

@hillham, I think that's a good attitude. Do something nice for yourself, whatever makes you happy. If it's getting a nice coffee or buying yourself some flowers or just reading a good book, do something good for YOU. Treat yourself if you start to feel down. Celebrate each milestone. What works for me is listening to my favorite music while I walk with my dog for an hour every day. It really lifts my spirits, and I reflect on how far I've come since last year. There inevitably are ups and downs, but as someone who has had a second chance at life, I've decided to leave the down times (months!) in the past.

I hope your treatments go well. I thought getting those radiation tattoos was so painful! 

Link to comment
Share on other sites

I got the tattoos. Maybe I should have been getting tattoos all my life because I really didn't feel anything! As I said before, I start cisplatin/pemextrexed on Friday and then the radiation will begin on May 25th. 

The esophagitis is a concern, of course. But I also wanted to ask if anyone had experience with these drugs and losing hair. Maybe I should post that question in a different section? The doctor told me it would "probably" fall out. 

Link to comment
Share on other sites

Hi, Glad to hear that the treatment plan is moving along as expected.  My friend, who had the same treatment plan as you, did indeed loose all of her hair after the second round of Cisplatin.  She eventually took her husband's clippers and bravely buzz cut the rest of her hair off.   Her hair grew back, but this time with curls.   So I suppose the upside of this is that if that happens you will never need another perm (which I hear is starting to make a comeback..... this younger generation is all abut viva la 80s....). 

Most employer sponsored insurance plans will cover a wig if you want one.  Also the clinic social worker and help you find a low cost option as well.  One of my friends just received a wig from a local non profit for free, she's delighted with it as it makes her look about ten years younger.

We are ALL rooting for you as you get started....  

Link to comment
Share on other sites

Yes, my hair fell out with carboplatin and it took a year to come back. A nice hairdresser will cut yours short or buzz it off for free. I've been using biotin to help it grow back. My new "chemo" hair is curly and I no longer color it. It still may change but nobody knows for sure. My eyelashes have fallen out several times too. The upside is that I have no hair on my legs anymore. 

I got some cute headcovers from Headcovers Unlimited and I still use one to this day as a warm hat.

Link to comment
Share on other sites

I lost my hair during treatment with cisplatin/docetaxel for a non-lung cancer. It was an interesting expeience. I went wig shopping with a friend-- a fun experience! I bought a cheap synthetic wig. Then I went to a support center at a local hospital (not my hospital) where they styled it free. I only wore it a couple of times.  It felt weird to me. I found I preferred scarves and hats and I accumulated a collection, which was entertaining. I also needed a little soft cap to sleep in because my scalp got cold.  

Losing my hair didn't bother me much. It came back much curlier. 

Link to comment
Share on other sites

I'm curious as to whether I'll lose any hair during the lymphodepletion part of my trial. I had no hair loss during my first-line treatment (Carboplatin plus Alimta and Keytruda), but the chemo they use to deplete my lymphocytes will be MUCH stronger (though it will be only for 5 days total). 

I decided not to spend over a hundred bucks to get my hair cut before I go in for treatment, though--just in case. I finally grew out my nice silver hair and, frankly, I hope it remains as is!  

Link to comment
Share on other sites

2 hours ago, LexieCat said:

I decided not to spend over a hundred bucks to get my hair cut before I go in for treatment, though--just in case. I finally grew out my nice silver hair and, frankly, I hope it remains as is!  

I hope so too!

Link to comment
Share on other sites

22 hours ago, LexieCat said:

I'm curious as to whether I'll lose any hair during the lymphodepletion part of my trial. I had no hair loss during my first-line treatment (Carboplatin plus Alimta and Keytruda), but the chemo they use to deplete my lymphocytes will be MUCH stronger (though it will be only for 5 days total). 

I decided not to spend over a hundred bucks to get my hair cut before I go in for treatment, though--just in case. I finally grew out my nice silver hair and, frankly, I hope it remains as is!  

Did I tell you that my son went through a very similar experience as your trial? Killed his entire immune system.

Link to comment
Share on other sites

Seems to me you did mention it once and that he was now doing well. Supposedly my lymphodepletion won't be as dramatic as, say, for a bone marrow transplant. I.e., my doc says I'll have enough immunity that I won't need to be re-vaccinated for everything. Doc says with something like that you have to be like the Bubble Boy--mine will require caution and in-patient treatment, but not as extreme as a complete wipeout of the immune system.

 

Link to comment
Share on other sites

I am hoping this trial is a great thing for you! I feel like you've given me a lot of strength in the past few days because I can see what a strong person you are. Thank you and really hoping for positive outcomes!  

Link to comment
Share on other sites

Thanks, hillham!

Apologies for the abundance of side-conversations we've posted on your thread--didn't mean to hijack, but sometimes stuff happens, lol.

Glad some of it has been helpful. I'm really excited about the trial. I always used to think clinical trials were for when you're truly at the end of your rope with no other options. The main reason I'm doing this one--right now--is that I'm strong/healthy enough overall to withstand what is a pretty intense treatment. If I waited, I might not be able to try it.

Clinical trials give you a chance to try out the latest and greatest treatments before they are generally available. Of course, there are no guarantees (which is why they're TRIALS), but lung cancer is so iffy anyway, even with the well-established treatments, it feels less risky than it otherwise might.

Hope you have a lot of success with your own treatment!

Link to comment
Share on other sites

Hillham,

You start your treatment today and that is a good thing.  Sometimes the hardest part of our experience with this disease is the waiting; first hearing the "potentially cancer" news, then diagnostic tests and then formation of treatment plan.  The anxiety begins to go down once we can move forward with a treatment plan to help relieve our condition.  Stay strong today and stay in touch.  We are all pulling for you.

Lou

Link to comment
Share on other sites

Hello Hillham,

I received Cisplatin and Gemcitabine for my treatment of Squamous Cell. I didn't lose all my hair, but it did thin out quite a bit.

Another thing to be aware of is tinnitus and possibly high-pitched hearing loss with the Cisplatin, as it is a platinum-based drug. I was never warned of this and my doctor denied it was a side effect, but sure enough, I have tinnitus and high-pitched hearing loss. I had to stop treatment after the second round out of four because of this. I would get a hearing exam before treatment and after in order to have a baseline. Good Luck!

JC

Link to comment
Share on other sites

Thanks everyone! I've been in the infusion room for about three hours. Received fluids, steroids, a vitamin b-12 shot a 15 minute massage (quite a surprise), and now the Alimta. I do feel better getting started.

I was told about the hearing issue, but I didn't think to get a baseline test. I'll look into that. 

As for the hair, I guess it's just going to be a wait and see...

 

 

Link to comment
Share on other sites

Good job! Yeah, I never really minded the infusions. There is a Starbucks attached to the treatment center and I'd always treat myself to a breakfast sandwich and a humongous cappuccino as a reward while I was in the chair. The nurses were always nice enough to zap anything I waned to have heated up. 

Link to comment
Share on other sites

On 5/13/2021 at 12:51 PM, LexieCat said:

Seems to me you did mention it once and that he was now doing well. Supposedly my lymphodepletion won't be as dramatic as, say, for a bone marrow transplant. I.e., my doc says I'll have enough immunity that I won't need to be re-vaccinated for everything. Doc says with something like that you have to be like the Bubble Boy--mine will require caution and in-patient treatment, but not as extreme as a complete wipeout of the immune system.

 

Yes. The young man is doing well. In fact he just moved out to an apartment with a buddy. I feel very excited for him but miss the little bugger!

Just get thru the low/no immune system and hopefully the rest will be a breeze.  My son seemed to handle it all very well...but he was 13. Thirteen year olds bounce, like the Bumble!

PS: He never lost his hair 

Peace

Tom

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...