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Judy M.

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  1. Like
    Judy M. reacted to BridgetO in A Lot Going On   
    Hi Judy,
    I'm sorry to hear your wretched cancer is giving you such a hard time. And I'm glad to hear that you're hanging in there and standing up to your onclogist. Keep it up!
    Bridget O
  2. Like
    Judy M. reacted to Tom Galli in A Lot Going On   
    Judy,
    You are right to feel disappointed but disappointment is not defeat.  I had NED after treatment, then the recurrence dance 4 times, and I have a good idea of how you feel. You are right to be reaching out for other treatment ideas and approaches.  Here is one:  The National Cancer Institute that designs "unique to patient" trials and treatments.  I didn't know this place existed till I attended last year's Hope Summit.  Dr. David S. Schrump who runs the lung cancer research team made an amazing presentation at the summit.  You can read about it here.
    It may be time to consider bringing the Schrump's group into the picture.  If you agree, write a short summary of your cancer treatment from diagnosis to current state and address it to  [email protected]
    They may have ideas or approaches.  
    Time to lock and load Judy.  You've got to fight to win so dig deep and muster the courage and fortitude to beat this horrid disease.
    Stay the course.
    Tom
  3. Like
    Judy M. got a reaction from BridgetO in Please help re: SABR/SBRT Therapy   
    Hi
    I've had SBRT type radiation on 4 different tumors. My side effects were simply a bit of fatigue and they worked quite well. Totally eliminated one tumor in my lung and knocked back other two tumors in my lung to below cancer level for over a year. Had it on an adrenal tumor and the effect on that one wasn't as long lasting. Radiation Oncologist told me SBRT is 90% effective on lung tumors and 50-80% effective on adrenal tumors. I wholeheartedly agree with Tom that you need to get a Radiation Oncologist on board. SBRT concentrates a large amount of radiation (very large) on the tumor itself then amount drops off steeply as it moves outward toward other organs, but is still there. So. there will be a concern about where your mom's tumor is located and what other organs are near and how much radiation those will receive. Cannot be done sometimes for that reason, but only a Rad. Oncologist can make that call. Also, it appears your mom is on some pretty strong chemo and it's working. They will sometimes not do SBRT at the same time as chemo because of concern about the patient being able to tolerate the cumulative effect of having both. And your mom is 75. I was 64 and in good health and the Rad. Oncologist would not agree to me having the SBRT concurrently with Chemo. I had to wait until after to have it.. But I had it on all 3 lung tumors concurrently. The treatments are not painful, and take little time. The only other issue I can think of is possible burn to skin at radiation site. I had none from SBRT  but have had some with standard radiation. You just need to take very good care of skin in that area and Rad. Oncologist can tell you how. Or jump back on here and I'll tell you how I did it. I'm a big fan of SBRT if your mom's tumor is in the right place and she's a candidate. Hope some of this helps. I wish you and your mom the very best. 
    Judy M
  4. Sad
    Judy M. got a reaction from bes in A Lot Going On   
    Have had a lot going on. Really no good news other that I'm still here and still in the fight. With so many new things going on in lung cancer treatment there's still hope. 
    Opdivo stopped progression for 4 months then major progression. I'd only had my original 3 lung tumors that had been treated with SBRT, a bone met in hip, and one in adrenal. All pretty small. Now have 2 more bone Mets, in both adrenals, spot in liver, and pleural effusion which we don't yet know if it has cancer cells. 
    The ablation I had on my left hip trochanter was worse than ineffective. This may (and I believe was) the result of an incompetent doctor. Increased my pain a lot, did not push back the tumor, and put me on a walker for 3 months. An expert in the field of Orthopedic surgery who just did my surgery said bone cement should not be put in the hip, it's for vertebrae. He removed as much as he could. 
    Hip tumor had eaten away part of my greater trochsnter and I had a crack somewhere in that left leg. They were concerned my femur would break. Sent to an Orthopedic Surgeon who specializes in treating bone tumors at a teaching hospital in my state. He placed 2 rods and a screw in that leg and just 10 days out now can already feel the difference in my pain and ability to walk. 
    Had a pleural effusion in left lung. The tumor there had progressed some. The effusion itself was very frightening because of the difficulties in breathing I experienced. Having it drained wasn't bad at all. Only slight pain and now I feel like a new woman. They drained a quart of fluid from my left lung that's now being tested for cancer cells. 
    Biopsy was taken of the bone met in my hip by Orthopedic surgeon. Waiting results. This is the first time my bone met has been biopsied since my Oncologist decided to only test the adrenal tumor originally and go with bone tumor being the same. Since I've had 2 primary cancers ( breast and lung) this may not be the case. 
    They are giving me 2 or 3 weeks to heal from leg surgery while deciding what to do as far as radiation and chemo next. A woman on another Lungevity forum I belong to who also has low PDL-1 and only KRAS mutation suggested Avastin. She said this had stopped the progression of her tumors once for 1 1/2 years and then again for 2 1/2 years between their trying other things. Right now simple stability looks pretty good. So I bounced this off my Oncologist APN. She said it doesn't work for everyone. I replied that as far as I know neither does anything else they have. So, we'll see. Has anyone out there had experience with Avastin? That's my question for today. 
    My conclusion from all this is that having the ablation was definitely a mistake. Other than that just time to put on what I think Tom calls my battle rattle and keep fighting. Can't decide if this is round 3 or 4. Probably three. 
    Judy McKay
  5. Like
    Judy M. got a reaction from Tom Galli in Please help re: SABR/SBRT Therapy   
    Hi
    I've had SBRT type radiation on 4 different tumors. My side effects were simply a bit of fatigue and they worked quite well. Totally eliminated one tumor in my lung and knocked back other two tumors in my lung to below cancer level for over a year. Had it on an adrenal tumor and the effect on that one wasn't as long lasting. Radiation Oncologist told me SBRT is 90% effective on lung tumors and 50-80% effective on adrenal tumors. I wholeheartedly agree with Tom that you need to get a Radiation Oncologist on board. SBRT concentrates a large amount of radiation (very large) on the tumor itself then amount drops off steeply as it moves outward toward other organs, but is still there. So. there will be a concern about where your mom's tumor is located and what other organs are near and how much radiation those will receive. Cannot be done sometimes for that reason, but only a Rad. Oncologist can make that call. Also, it appears your mom is on some pretty strong chemo and it's working. They will sometimes not do SBRT at the same time as chemo because of concern about the patient being able to tolerate the cumulative effect of having both. And your mom is 75. I was 64 and in good health and the Rad. Oncologist would not agree to me having the SBRT concurrently with Chemo. I had to wait until after to have it.. But I had it on all 3 lung tumors concurrently. The treatments are not painful, and take little time. The only other issue I can think of is possible burn to skin at radiation site. I had none from SBRT  but have had some with standard radiation. You just need to take very good care of skin in that area and Rad. Oncologist can tell you how. Or jump back on here and I'll tell you how I did it. I'm a big fan of SBRT if your mom's tumor is in the right place and she's a candidate. Hope some of this helps. I wish you and your mom the very best. 
    Judy M
  6. Like
    Judy M. got a reaction from LexieCat in Please help re: SABR/SBRT Therapy   
    Hi
    I've had SBRT type radiation on 4 different tumors. My side effects were simply a bit of fatigue and they worked quite well. Totally eliminated one tumor in my lung and knocked back other two tumors in my lung to below cancer level for over a year. Had it on an adrenal tumor and the effect on that one wasn't as long lasting. Radiation Oncologist told me SBRT is 90% effective on lung tumors and 50-80% effective on adrenal tumors. I wholeheartedly agree with Tom that you need to get a Radiation Oncologist on board. SBRT concentrates a large amount of radiation (very large) on the tumor itself then amount drops off steeply as it moves outward toward other organs, but is still there. So. there will be a concern about where your mom's tumor is located and what other organs are near and how much radiation those will receive. Cannot be done sometimes for that reason, but only a Rad. Oncologist can make that call. Also, it appears your mom is on some pretty strong chemo and it's working. They will sometimes not do SBRT at the same time as chemo because of concern about the patient being able to tolerate the cumulative effect of having both. And your mom is 75. I was 64 and in good health and the Rad. Oncologist would not agree to me having the SBRT concurrently with Chemo. I had to wait until after to have it.. But I had it on all 3 lung tumors concurrently. The treatments are not painful, and take little time. The only other issue I can think of is possible burn to skin at radiation site. I had none from SBRT  but have had some with standard radiation. You just need to take very good care of skin in that area and Rad. Oncologist can tell you how. Or jump back on here and I'll tell you how I did it. I'm a big fan of SBRT if your mom's tumor is in the right place and she's a candidate. Hope some of this helps. I wish you and your mom the very best. 
    Judy M
  7. Like
    Judy M. reacted to Steff in A Lot Going On   
    uugghh, so sorry Judy
    Like you said, with so many things going on related to lung cancer treatment, there is always hope.  Hang in there.  I am thinking of you.
  8. Like
    Judy M. got a reaction from PaulaC in A Lot Going On   
    Thank you, Lexie. I really put off posting this update because it sounds so negative. But perhaps the experiences I'm having will help someone. And there may be some out there who can give me some more info on Avastin. 
    Judy M. 
  9. Like
    Judy M. reacted to Kleo in Cisplatin/Alimta Experiences?   
    Hi! I just finished 3 rounds of this combo then one with Carboplatin/Alimta instead of the Cisplatin on June 7. I'm 52.  As the others have said, everyone tolerates it differently. Judy is right it does take a long time for the infusions just because of all the other meds they give ya to go along with it! I didn't swell up from the steroids at all but I did get a lovely case of thrush that just hung on for all 4 rounds. For me, that was much worse than the nausea was! I found that I generally felt ok on infusion day plus one or 2 days afterward. After that I felt pretty crappy for a couple days, and generally by the 7th day post infusion I started feeling ok again. But even on my bad days, I still was able to go to the store or pharmacy or do whatever errands I really needed to do.
    I did go often for fluid infusions though. I don't know if they helped really but I wanted to flush my system. I just cannot drink the amount of fluid they want ya to. I had to take folic acid supplements daily and I also had to do the occasional B-12 shot for the Alimta.
    I didn't lose my hair. I maintained my weight. Had mild ringing in the ears but that's pretty much gone now. Neuropathy in my left foot which is why the doc changed my last infusion. Everything tasted nasty for the first week. Like I was trying to drink my coffee with a mouthful of pennies. Chemo is so weird. LOL
     But best of all....after the 3rd round it had shrunk the tumor and lowered the activity level by more than half!
     
    Hope all goes well for you!
    Kim 
     
     
     
     
      
     
     
  10. Like
    Judy M. got a reaction from Robert Macaulay in Cisplatin/Alimta Experiences?   
    PHi
    Not in my 40's but had 4 rounds of Cisplatin/Alimta. With the steroids and the many bags of fluid they gave me each round I looked like the Pillsbury Doughboy right after infusion. By the second one my face and eyes were even swollen. This gradually went away. Had nausea the evening after. Learned that peppermint candy worked as well or better than the pain meds for that. Had constipation and food issues. Food tasted really nasty. Peppermint, lemon, and ice cream tasted pretty good. Also donuts. So I wasn:t a healthy eater. But I didn't lose weight thanks to the steroids. The only other thing I can think of is that infusion was very long. It took 7 hours. And as you'll read elsewhere here your best bet is to keep a record of your symptoms the first time and have a plan to deal with them because they'll be the same at about the same time each infusion. By the last one I was very tired and had drenching night sweats. I lost about 1/3 of my hair and the texture became very fine. Continued to lose it for a while afterward. So everyone is different but that was my experience. If you bring each symptom here to the forum you'll get good suggestions on ways to deal with it. Hope it goes well for you and destroys the little evil cancer critters. 
    Judy M
  11. Like
    Judy M. got a reaction from eullrich66 in Cisplatin/Alimta Experiences?   
    PHi
    Not in my 40's but had 4 rounds of Cisplatin/Alimta. With the steroids and the many bags of fluid they gave me each round I looked like the Pillsbury Doughboy right after infusion. By the second one my face and eyes were even swollen. This gradually went away. Had nausea the evening after. Learned that peppermint candy worked as well or better than the pain meds for that. Had constipation and food issues. Food tasted really nasty. Peppermint, lemon, and ice cream tasted pretty good. Also donuts. So I wasn:t a healthy eater. But I didn't lose weight thanks to the steroids. The only other thing I can think of is that infusion was very long. It took 7 hours. And as you'll read elsewhere here your best bet is to keep a record of your symptoms the first time and have a plan to deal with them because they'll be the same at about the same time each infusion. By the last one I was very tired and had drenching night sweats. I lost about 1/3 of my hair and the texture became very fine. Continued to lose it for a while afterward. So everyone is different but that was my experience. If you bring each symptom here to the forum you'll get good suggestions on ways to deal with it. Hope it goes well for you and destroys the little evil cancer critters. 
    Judy M
  12. Like
    Judy M. got a reaction from PaulaC in Cisplatin/Alimta Experiences?   
    PHi
    Not in my 40's but had 4 rounds of Cisplatin/Alimta. With the steroids and the many bags of fluid they gave me each round I looked like the Pillsbury Doughboy right after infusion. By the second one my face and eyes were even swollen. This gradually went away. Had nausea the evening after. Learned that peppermint candy worked as well or better than the pain meds for that. Had constipation and food issues. Food tasted really nasty. Peppermint, lemon, and ice cream tasted pretty good. Also donuts. So I wasn:t a healthy eater. But I didn't lose weight thanks to the steroids. The only other thing I can think of is that infusion was very long. It took 7 hours. And as you'll read elsewhere here your best bet is to keep a record of your symptoms the first time and have a plan to deal with them because they'll be the same at about the same time each infusion. By the last one I was very tired and had drenching night sweats. I lost about 1/3 of my hair and the texture became very fine. Continued to lose it for a while afterward. So everyone is different but that was my experience. If you bring each symptom here to the forum you'll get good suggestions on ways to deal with it. Hope it goes well for you and destroys the little evil cancer critters. 
    Judy M
  13. Like
    Judy M. got a reaction from Susan Cornett in Cisplatin/Alimta Experiences?   
    PHi
    Not in my 40's but had 4 rounds of Cisplatin/Alimta. With the steroids and the many bags of fluid they gave me each round I looked like the Pillsbury Doughboy right after infusion. By the second one my face and eyes were even swollen. This gradually went away. Had nausea the evening after. Learned that peppermint candy worked as well or better than the pain meds for that. Had constipation and food issues. Food tasted really nasty. Peppermint, lemon, and ice cream tasted pretty good. Also donuts. So I wasn:t a healthy eater. But I didn't lose weight thanks to the steroids. The only other thing I can think of is that infusion was very long. It took 7 hours. And as you'll read elsewhere here your best bet is to keep a record of your symptoms the first time and have a plan to deal with them because they'll be the same at about the same time each infusion. By the last one I was very tired and had drenching night sweats. I lost about 1/3 of my hair and the texture became very fine. Continued to lose it for a while afterward. So everyone is different but that was my experience. If you bring each symptom here to the forum you'll get good suggestions on ways to deal with it. Hope it goes well for you and destroys the little evil cancer critters. 
    Judy M
  14. Like
    Judy M. got a reaction from LaurenH in Cisplatin/Alimta Experiences?   
    PHi
    Not in my 40's but had 4 rounds of Cisplatin/Alimta. With the steroids and the many bags of fluid they gave me each round I looked like the Pillsbury Doughboy right after infusion. By the second one my face and eyes were even swollen. This gradually went away. Had nausea the evening after. Learned that peppermint candy worked as well or better than the pain meds for that. Had constipation and food issues. Food tasted really nasty. Peppermint, lemon, and ice cream tasted pretty good. Also donuts. So I wasn:t a healthy eater. But I didn't lose weight thanks to the steroids. The only other thing I can think of is that infusion was very long. It took 7 hours. And as you'll read elsewhere here your best bet is to keep a record of your symptoms the first time and have a plan to deal with them because they'll be the same at about the same time each infusion. By the last one I was very tired and had drenching night sweats. I lost about 1/3 of my hair and the texture became very fine. Continued to lose it for a while afterward. So everyone is different but that was my experience. If you bring each symptom here to the forum you'll get good suggestions on ways to deal with it. Hope it goes well for you and destroys the little evil cancer critters. 
    Judy M
  15. Like
    Judy M. got a reaction from Tom Galli in Cisplatin/Alimta Experiences?   
    PHi
    Not in my 40's but had 4 rounds of Cisplatin/Alimta. With the steroids and the many bags of fluid they gave me each round I looked like the Pillsbury Doughboy right after infusion. By the second one my face and eyes were even swollen. This gradually went away. Had nausea the evening after. Learned that peppermint candy worked as well or better than the pain meds for that. Had constipation and food issues. Food tasted really nasty. Peppermint, lemon, and ice cream tasted pretty good. Also donuts. So I wasn:t a healthy eater. But I didn't lose weight thanks to the steroids. The only other thing I can think of is that infusion was very long. It took 7 hours. And as you'll read elsewhere here your best bet is to keep a record of your symptoms the first time and have a plan to deal with them because they'll be the same at about the same time each infusion. By the last one I was very tired and had drenching night sweats. I lost about 1/3 of my hair and the texture became very fine. Continued to lose it for a while afterward. So everyone is different but that was my experience. If you bring each symptom here to the forum you'll get good suggestions on ways to deal with it. Hope it goes well for you and destroys the little evil cancer critters. 
    Judy M
  16. Like
    Judy M. reacted to KatieB in Am I stupid to even try?   
    Cancer can steal our dreams if we let it.  While you may not be able to dance a full production schedule- there may be things that you can still do to be a part of this production that you love.  
    Have a frank conversation with the coordinators/producers and find an area that would be a good fit- maybe partner with someone so that if you have to miss a rehersal or deadline they can cover when you are not there.
    It's about adjusting to your current situation while still holding onto the things you love to do.
    Keep us posted on what you decide.
    Hugs.
  17. Like
    Judy M. got a reaction from bes in husbands update   
    For future reference because of stricter regulations for pain meds now you have to have a written prescription for them. Just the pain meds can no longer be called in. One more hassle to deal with but it is what it is. The drug seekers are making it harder and harder on those of us who actually have that level of pain and need those drugs. 
    Judy McKay
  18. Like
    Judy M. got a reaction from Tom Galli in husbands update   
    For future reference because of stricter regulations for pain meds now you have to have a written prescription for them. Just the pain meds can no longer be called in. One more hassle to deal with but it is what it is. The drug seekers are making it harder and harder on those of us who actually have that level of pain and need those drugs. 
    Judy McKay
  19. Like
    Judy M. got a reaction from PaulaC in CT scan tomorrow   
    Great news!! Thanks so much for sharing it and giving the rest of a a mental boost. Hope surgery goes really well. 
    Judy McKay
  20. Like
    Judy M. got a reaction from LexieCat in husbands update   
    Have been on both sides. Took care of hubby with spinal tumor (turned out benign, praise God) and now I'm the patient. His personality changed significantly. We found out later part of it was a med he was on. He became really irritable. Sometimes I had to just go off and cry and pray. God was my best place to dump. Now, I'm going through the trying to judge the pain thing because it does vary so much. I thought cancer pain would be consistent and it certainly isn't. If I take too much I'll feel like I'm going to pass out. If I take too little pain will be bad and hard to get ahead of it again. It really is a Rollercoaster for the patient also. 
    Judy McKay
  21. Like
    Judy M. reacted to Tom Galli in I'm new here. Especially interested in tagrisso   
    SRC,
    I was diagnosed with late stage lung cancer almost 15 years ago and well before the EGFR inhibitor Tagrisso was discovered (here is information about the drug and the new targeted therapies recently approved by the FDA).  Once I was projected to live less than 6 months, but my faith sustained me and a newly emerged treatment resolved my lung cancer.  Mine was an arduous journey. You son's may be also because lung cancer is unusually persistent.  Recurrences after successful treatments are common.  
    Faith and hope are vastly important in my life.  My faith sustains me and allows the benefits of hope to work in my life.  Here is a short essay on my views of hope and faith. Your most important takeaway from my experience in treatment is if I can live, so can your son.
    Tagrisso is a remarkable drug that is very very successful for some lung cancer patients that display the EGFR genetic marker.  I hope your son is among those it works for.  If not, the Lord will provide other remedies. 
    Stay the course.
    Tom
  22. Like
    Judy M. reacted to S.R.C. in I'm new here. Especially interested in tagrisso   
    My son was diagnosed with Adenocarcinoma Egfr mutation stage 4 on 7/8/18. He has had radiation for his brain and spine. He started taking Tagrisso on 7/31/18.
    He will turn 28 next month. He has a wonderful wife, 8 year old daughter and a 6 month old baby boy.
    He has lost a lot of weight. He was thin to start with. He is now only 110 lbs. Up until now he has always been very healthy. It scares me. We were told the drug wouldn't bring improvement for at least 4 weeks. It will be 2 weeks on Tuesday.
    I would be interested in hearing of any experiences with this drug. Any ideas or info that might be helpful.
    The cancer seems to be everywhere. It all happened so fast.
    I know God is in control. He is with us on this journey. He will see us through. 
    38For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, 39nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord. Rom.8:38 & 39
    Thank you in advance for any experience, hope, encouragement and knowledge you may have to share. I realise it has been gained at a cost.
    SRC
     
  23. Like
    Judy M. reacted to DrBee in NSCLC Round 3   
    YES Susan!!! Such great news! Big exhale in Illinois as well!
  24. Like
    Judy M. reacted to DrBee in Serum versus tissue testing   
    I just realised I had posted updates to this elsewhere but not here. I was so keen to get going on treatment once we got our Stage IV diagnosis. We got ALK+ results on Monday, started Alectinib yesterday. Fingers crossed! 
     
  25. Like
    Judy M. reacted to LOVEMAMA in Symptom alleviation with Keytruda - quality of life   
    Hello Dr Bee,
    If your husband's PDL1 score is 99%, it worth to try it....
    My mothers score is 10%, we tried it and hope it could work!
    She got fever and feels tried.... but we should try it...
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