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Opal

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Posts posted by Opal

  1. On 8/30/2022 at 6:47 PM, RonH said:

    This must be CT season. Even though I didn't "graduate from the Durva club" by only making it to 18 Infusions before being shipped off to the ALK+ mutant gang and started on a Targeted Therapy drug, ALECTINIB, I had my quarterly CT yesterday. Although I don't see my ONC till Thursday, I read the Radiologists report this morning. 

    IMPRESSION: Stable exam without evidence of local recurrence or thoracic metastatic disease.

    😃

    Ron, you are an honorary Durva member anyway. I think 18 infusions qualifies you for sure!  

    Great good news!

  2. Hey all you gals and guys NED!! So happy to hear...hugs and kisses.

    Yep, Rower..luv ya and think of my contact with you that dreadful day often. My heart still sad for my hubby. He was a real good guy and never once complained thru that long PanCan "journey". 

    TX for your support.  

    Anyway, I'm not on site too often as I'm caregiving for my Mom. Last 6-7 years and been one thing after another. And oh yes, I got a puppy who is now 2 and keeps me crazy busy. 

    Happy for ya all.. Barb, Jersey girls, Tomm and the entire Durva club.  Wondering does anyone get to stretch scans out to 6 months or annually now??

    Rower, 4 years!?   Really??  You always gave me hope!! Thank you. My heart is singing! (Corny but true)

    I guess we're part of the new stats now, huh??

    Love you all!!

    Ps:. Wondering if anyone else has other health blips now going on and wonders/worries if it's the C, radiation or treatment result?  I now have a Cardio doc.

    Opal

     

     

  3. Kelvin- I didn't feel really bad during immunotherapy. Worst side effect was the rash, head to toe. It didnt itch or anything just red blotches head to toe. As it appeared in one new area it disappeared in the last. Dermatologists couldn't figure it just said from immuno.  Also fatigue and lack of sleep. 

    I found eating many small meals a day worked better. I got hooked on Ramen noodle soup. And milkshakes to keep my weight on. 

  4. Hi Kelvinn, I read about your Mom and had to post as Tomm did. I was 3a and went thru the chemo, rad and 26 weeks of Durva finishing in Nov 2019 (if I remember correctly...I try to put that past behind me tho thankful for the treatment and wonderful doctors etc. And this forum for sure!!)

    Anyway like Tomm, I'm almost 3 years NED.  Yay! Due for next 6 mos CT in September. 

    Please tell your Mom to have faith and hope.  At time of diagnosis, I was a zombie fearing how could I ever get thru that regiment of treatmemt!?  I did it and survived (without a port no less).  At this time, my husband was going on 3 years in doing treatments for PanCan.  Life was a B_ _ _ _! 

    My Rad doc was great! He told me "attitude is everything", keep smiling, and eat eat eat! So I did. 

    Fatigue was a side effect and I still do not sleep as I did before treatments. I recently learned I have broncheiastasis and I have an annoying cough.  If that's what I must deal with now, I feel blessed. 

    The best to your Mom and you. 

     

  5. Hi All, and happy new year. It's a great feeling welcoming another year. And hard to believe the time that passed since Durva forum started. 

    I was so truly happy to see posts and especially the 5 year cancerversary, Tomm. Way to go! TX for sharing. It is great encouragement, at least for me. November was 3 years I finished my Durva. March are scans and if all is well, I should be able to do scans annually. Makes me a bit nervous but I will think positive.

    M Rower, sorry to learn you lost your Mom. I help out to care for mine, she turns 91 end of this week. 

    Lexiecat you're in my prayers.

    Barb, Ron, Sillycat, Eagle 13, Tom G and anyone I may have left off here it's great to see your posts.

    God Bless, stay safe and healthy. Hugs to all.

    Opal

     

  6. Sillycat...re the port... No wonder woman here. I watched my husband get stabbed in his port for 2 years before I started chemo then Durva.  His stab looked much more painful. I used to get weak in the knees. Just wanted to throw that out there in case anyone gets a port removed and ever (hope and pray not) has need for one. The vein route isn't so bad.

    Opal

  7. Sillycat!!  Congrats!! Welcome to Done Durva Club.  You did it!! 

    I survived the infusions, all 26, no port. Went the vein route but my Onc said I had good veins no reason to give me a port. In a crazy way I got used to it  but don't know how because I'm wildly petrified of needles.  Nurses were wonderful!

    Enjoy having a little extra space on your calendar now and Best Wishes for great scans.

    Opal

  8. PShsy...it will take some work to get a second opinion but definitely worth it. Get your medical file, treatment records, and get a different Oncologist. Get in to see one ASAP. You're city is going green or opening up I thought I heard. 

    Perhaps when Rower reads your post I'm sure she will have a couple of ideas to pass on. She's got Jersey girl roots not so far away.

    You and your health are definitely worth your time so Just Do It. Pleez?

    Good going getting into biking and yoga. 

  9. Note to Lindsay, and then PShsy...

    Warning, this is long, sorry.

    Lindsay I finished #26 infusion about 6 months ago. Here's my side effects story..  Keeping in mind I did NOT get double dose once a month. At my #2 infusion I also received a flu shot. About 2 weeks after that infusion I started to develop a rash. A minor side affect not too prevalent or talked about. My rash didn't itch, it was just red blotches which started on face and disappeared then showed up on my neck and chin, and disappeared did this small sections until it hit my ankles. Not pretty but not painful. Derma gave me every cream and ointment but nothing helped it. A couple Durvies sent me a link that apparently those administering never realized that one should not get Durva AND a flu shot same day or I was just sensitive. 

    So along with this (Polly pleez note) an early scan showed slight pneumonitis. Thus Durva was held and I was on 70mg Prednisone and tapered down over I think the next 6 weeks. Steroids were awful. I cried, got cranky and wanted to eat but tried not to. Rash disappeared and so did pneumonitis. Back on Durva. Polly why are they taking you off? My main complaint, I could only sleep it seemed in 3 hour increments for the duration. Fatigue was terrible. I too gained the 30 pounds without really eating more, probably less then normal. It was all in my mid section. I continued on exhausted but managed. Scans showed shrinkage and good stuff. I didn't have PDL or a mutation. Testing showed no active "C".

    At 20 weeks I was noticing knee and joint pain which continued and lessened just recently. I get stiff now in joints at one position for long periods but chalk it up to a few years older. Not complaining.

    Last week I had my 3 month scans and all is well. Stable and labs great. My Onc seems to think I may be stretching scans to 6 month intervals after September's. I like that but then I don't.   I managed 26 infusions and a separate lab poke for each visit without a port and no problem. I attribute that to some very good nurses. 

    Well thru all this, I wondered if I'd get a head/brain scan ever again. I was told no symptoms, Stage 3 no scans needed. I still worried.

    Yesterday afternoon while sharing care giving for my Mom, I jumped up from a cat nap and tried to make a quick dash to my Mom except that my face had a quick meeting with the kitchen floor. I ended up in ER (oh I didn't want to go!) with 6 stitches, a broken tooth and a sprained pinky finger. Two inches I would have hit the soft carpet.  There is a silver lining in this. Stitches in the eyebrow and all.....ER had to do a head scan.  All is good. Clean and clear.

    I wish all you Durvies and caregivers courage, strength, faith and hope to keep going. Miracles do happen.

    Hugs to all,

    Opal

     

  10. Barb, CONGRATS and welcome to Done With Durva club.  Go take that vacation, even if only in your mind. 

    Ron, sounds good. An optimistic ONC can make all the difference. Maybe a blessing your first doc sent your for that second opinion. Hang in and stay positive.

    Opal

  11. 4 hours ago, Barb1260 said:

     I’m starting to get very anxious about what happens after. Just scans until it decides to rear it’s ugly head?  I’m not sure what to expect. Anybody have any thoughts?

    Barb, way to go! One and done!! 

    I know exactly how you're feeling about getting done. It is strange after so many appointments, treatments and scans...always something to keep it in check and now only scans every 3 months. Can be a little scary. It seems to always be in the back of my mind until I forget about it. Then I try to be normal, the old me again.  I try and remind myself anxiety is not good for the immune system. It CAN make you sick.

    I don't agree with you on the rear ugly head part. That's not a given. Yes, we hear about reoccurrence but I also heard of survivors who had only one go round and are living long lives. I prefer to keep that in mind. 

    So for now Jersey Girl, let it go and enjoy your new found freedom. 

    Opal

  12. Ron, real sorry to hear you have to go thru all that but don't you dare give up!!  I will be praying for you and that all the best medical professionals will be brought before you. Miracles do happen. Believe it. Take care. Think positive.

    Opal

  13. BC Joe, If I remember correctly that is what my Onc/Rad doc told me, there was slight shadow n could be scar . I don't know how they know. Im on way to get scan and meet with him now. If I find the answer I'll let you know. Finger, toes and eyes crossed for good results.

    Best wishes for continued Durva treatment.

    Opal

     

  14. This isn't the proper forum for my request, but am most familiar with my Durva buddies here. 

    Can I ask, if I may for your prayers and good vibes please. My hubby is in treatment for this dreaded disease but his is PanCan stg 4. He was doing great for 3 years till recently. He's had pain and docs trying to get his meds right and get him stronger to do chemo again. . It's been a nightmare. 

    I am thankful I've been strong as I have been to care for him. 

    Thank you, Opal

  15. DFK, welcome to Post Durva Club 👏. You did it!!

    Your updated post gave me goose bumps. So can relate.!  Did you ring tge bell?  And may I say YOU are a "tough cookie" or wonder woman. Your  travels of getting up and going to the airport then same return trip. Yikes, I complained some early mornings walking to the car cause I hated the depressing ride into the city. I stopped complaining after I read your post on your infusion trips. 

    Will be looking for your follow up progress. My progress report on weight gain not great. I only lost 3 pounds since November and I'm not eating ice cream or junk. A ways to go. 

    Also mindful of my blessings,

    Opal

     

  16. 7 hours ago, DFK said:

    Hi Opal,

    You are a tough cookie.....As much as I have an aversion to pain, I elected to have a port placed in lieu of lab draws and IV insertions. Now I'm fretting the removal of my port. I know I'll be numbed up good for the removal but it's the healing and the subsequent "healing" pain I dread. I suppose after all that I have been thru, I can weather this too.

    Thanks, DFK

    Hi DFK,  Thank you, but no tough cookie here. My doc said I have good veins (hope they still are) and there was no need for a port unless I really wanted one. I get weak in the knees and was more afraid of a port so I declined. I will say some infusion staff were so good I never felt  the needle. 

    Anyway, I think you got this and will breeze thru your port removal just fine. Remember you came out on top before and you will do it again. Sending good wishes and prayers your way.

    Take good care,

    Opal

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