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Chemo reaction. Need some perspective pls


#1

So my husband had one round of inpatient AIM last summer as adjuvant following surgery to amputate his right arm and clean scans. Got neutropenia right away and back in hospital for another week. He felt so bad that he stopped chemo and since scans were clean and you never know if chemo works or not until you try, I supported the decision. He has had significant phantom pain since first surgery. But started to get under control a end of last year

So he had a local recurrence with another surgery and now some lung mets this year. Radiation, a second surgery. All good. Now chemo again. Oncology team did everything humanly possible to manage pain and nausea and he did quite well until last day. Now he feels so bad he is basically just lying bed. Not taking meds cannot eat or drink. I got a sancuso patch started today and not sure when or if it will kick in

So is this the way it is and we simply have to weather the storm? What to do when it seems like nothing works? How can we do this repeatedly?

Would like perspective if this is what we should expect. Pain patches and nausea patches. What else is there? Meds for breakthrough pain. What else to try. He can take a lot but chemo kicks his butt

Thanks!


#2

The Neulasta injection might be causing some of this? My boyfriend switched to neupogen and it was like night and day.


#3

Thanks. We tried the Claritan trick this time after learning about it here. Our doctor cals it voodoo medicine but admitted there is a clinical trial underway to validate it.

Did you need insurance prior approval for neurogen?


#4

Have you tried Emend for nausea? My doctor once recommended it and it work really well for me. As far as pain, is it localized? Have you tried Versatis before? It’s lidocaine patches, work wonders.


#5

So sorry to hear of the challenges your husband is having (and you as his number 1 fan)! These storms are rough but keep asking his care team for ideas and specifically ask them to think outside the box. Sometimes talking to the pharmacist within your oncology team is helpful. How is your husband sleeping? I ask because while my husband was undergoing chemo…he was not sleeping restfully and up and down quite a bit with nausea. His doc prescribed adavan ( not sure I spelled correctly). He would take it at night and would take the edge off the nerves that played into the nausea. A couple good sleeps and he felt a ton better. Stay strong!


#6

People have told my husband and I about marijuana for nausea and pain. Luckily we haven’t had to us it. Not smoking it but candy ect. or oil. I have heard a lot of great things about it. My husband has always been against the use of it but now if he ever needs it he would try anything to get relief!


#7

Emend and marinol the THC pills helped me with the nausea. Nothing seemed to work for the upset stomach and I didn't vomit but just had a terrible sour stomach and gagging reflux all the time. Those two worked for me. I may be starting chemo again and I'm kinda surprised at how much further they have come even with expected side effects of chemo. Seems they have other options. The nurse told me that we should not suffer, there are things available. Although they always seem to say that. Hate your husband is going through so much. Regarding the pain patches, the fentanyl (not sure if I'm spelling correctly) patches did help me. Best of luck to all of you because your fighting this together! Keep strong and challenge your docs, be your own advocates!


#8

Thanks for all the info. Turns out he was on emend in hospital. Since the last post he was readmittedmfor neutropenia and kidney damage Hoping kidneys are related to extreme dehydration and will correct with fluids

Next question to see any anyone has experienced this. After last port install he got fluid on one lung. Had it extracted before starting chemo and now it is back. Fluid does NOT contain cancer cells per pathology. Any idea why happening? Doctors do not seem to know. But it is happening again

Also since he cannot tolerate AIM, what would you try next? Gem+dox or votrient? He is losing confidence in his team and may need to move on. Any good sarcoma teams in Maryland or DC

Thanks. Sorry lots of questions .


#9

George, you may want to start 2 new discussions with these questions. Here is a discussion about something similar except the fluid was around the heart:

http://www.synovialsarcomasurvivors.org/forum/topics/fluid-around-the-heart

John Hopkins is supposed to be good but isn't it where he is being treated right now? Has he ever checked if he was eligible for the immunotherapy trial at NIH?


#10

Do you happen to know more identifying in on immunology trial at NIH? Looking around this site and not sure which one you are referencing. Thanks in advance foe info

Need another option besides AIM as treatment is worse than disease sadly for him

Thanks!


#11

Pls disregard question above. Found several trials to evaluate thanks


#12

Dr. Dennis Priebat: Washington Cancer Institute @ Washington Hospital Center

George said:

Thanks for all the info. Turns out he was on emend in hospital. Since the last post he was readmittedmfor neutropenia and kidney damage Hoping kidneys are related to extreme dehydration and will correct with fluids

Next question to see any anyone has experienced this. After last port install he got fluid on one lung. Had it extracted before starting chemo and now it is back. Fluid does NOT contain cancer cells per pathology. Any idea why happening? Doctors do not seem to know. But it is happening again

Also since he cannot tolerate AIM, what would you try next? Gem+dox or votrient? He is losing confidence in his team and may need to move on. Any good sarcoma teams in Maryland or DC

Thanks. Sorry lots of questions .

#13

Thank you! Much appreciated


#14

There are also sarcoma trials at Johns Hopkins