Combo Question

This topic has 10 replies, 8 voices, and was last updated 4 years, 5 months ago by nasullivan.

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- November 3, 2019 at 9:59 pm
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CG
Participant
So I have been reading for a while and finally decided to post. I was diagnosed as Stage 4 back at the end of August and started the combo at that time. The initial scans at that time showed only my liver was involved. Now, 8 weeks later, I did another set of scans, my liver is worse and it also is in my lungs. Everything just seems to be going in the wrong direction so quickly. I was wondering how long it took others to start seeing some positive results on the combo. Plus I’m not a candidate for the targeted therapies, so there is even more pressure on the combo working for me.

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- - November 3, 2019 at 10:45 pm
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  JudiAU
  Participant
  I’ve two of four combo treatments. I think was hospitalized for a few days due to raging headaches/fever. The testing revealed the my brain met had progressed somewhat and my neurosurgeon wanted it out. Crainiotomy last week. Two weeks later I’m restarting immunotherapy along with a short radiation course. There was a small amount of progression.
  
  I’d say my doctor was pretty blasé about the growths etc. and certainly is not causing me not to panic. The immunotherapy takes time to work and he wasn’t changing course.
- - November 3, 2019 at 11:03 pm
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  gopher38
  Participant
  First, I get the impression that every person is different with regard to immunotherapy. I also believe that it takes time for the therapy to build steam, and the first steps can also look BAD, rather than positive. Hope that’s the case with you.
- - November 3, 2019 at 11:21 pm
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  Mark_DC
  Participant
  Dear CG – three months may be a little too early, also as one of the respondents mentioned, sometimes there is pseudo progression before being resolved (Check the studies on bublles website also some of eds and other people posts to asco cideos for the data)
  You say there is worsneing but dont mention the sizes, in my case i was onpembro only, it cured one small lesion but for the other it Give me very slow progression but no spread, it was kind of buying time
  While it may seem disappointing I would try not to worry yet
  Also make sure to be seeing a melanoma specialist, discuss with him or her, and whther s/he has a plan B – a good doctor will have one most likely cliniical trials
  
  Good luck i pray things will soon work out
  Mark
  - November 4, 2019 at 12:36 am
    
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    CG
    Participant
    
    I am seeing a specialist at MSK in NY so I will definitely have access to multiple clinical trials if it comes to that. For now, the plan is to continue with the combo, but my doctor has a plan B (and C) if needed. The lesions in my liver started out at 2cm and are now at 4. The ones in my lungs are between 2 and 3cm. I know I just have to wait it out, but we all know that sometimes that’s not so easy.
  - November 19, 2019 at 2:32 am
    
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    nasullivan
    Participant
    
    Who are you seeing? We are at MSK in NY too!
- - November 4, 2019 at 1:57 pm
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  Hukill
  Participant
  Like they said, everyone is different but my first question to you would be are you showing any signs of side effects? For me the next week after the first combo the rash appeared. I had 7 tumors in my lungs and had developed a dry cough and had some sharp pain in my right upper chest. When the rash appeared the cough and pain went away and at 8 weeks 6 of the 7 were smaller and I had lots of side effects by this time.
  - November 6, 2019 at 5:11 pm
    
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    sks2019
    Participant
    
    Are you trying to say that side effects were sign that it was working, my mom is in the same situation, 3 doses of combo and the liver lesions have multiplied but they are all next to each other , the largest that was 1 cm in Aug is now 4 cm , says as ” Ring enhancing” liver lesion. SO far my mom has no side effects.
  - November 6, 2019 at 7:42 pm
    
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    Hukill
    Participant
    
    Well, I am no Dr but I had noticed my dry cough and pain in my right upper chest about 1 1/2 months before I found the lump in my shoulder. Never smoked or inhaled anything I wasn’t supposed to so the cough did worry me. For me when the rash appeared over both arms and upper chest and back basically overnight and then the cough and pain stopped I had no doubt my immune system was doing something. I really hope your mother’s immune system is reacting and some sign is seen soon. I had 7 different side effects and still deal with 4 even though my last treatment was 08/2018.
  - November 7, 2019 at 5:50 am
    
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    sks2019
    Participant
    
    Only side effect she is having right now is the UTI which she never had before in her life. Doctor is denying it is a side effect as it is not documented anywhere she is on antibiotics and this is her second round is antibiotics. They are sending her case to be reviewed at the tumor board at ucsf , I don’t what’s next for her. Although I know I should’nt be hopeful but I am still praying they conclude it as a pseudo progression
  - November 8, 2019 at 11:26 pm
    
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    MelanomaMike
    Participant
    
    Exactly, when i did 7 infusions of Keytruda the only side effect i had was my Thyroid shut down but many other drugs can do the very same, even if its not cancer meds. I had some tumors shrink and some disappeared to! Side effects doesnt prove its working or not, studies are out there about this i believe…