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Viewing 15 posts - 1 through 15 (of 16 total)
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  • in reply to: Mekinist and Tafinlar side effects #66857
    Jupke
    Participant

    Hi Mikers,

    I’m all for patients to be well informed and empowered regarding their disease, prescribed drugs or interaction with their practitioner.

    All I’m saying is that the first and most relyable source of information in these matters is the patients guide that comes with the drugs and the advice from your practitioner when in doubt.

    The first action to become a “model” patient is to fully read and understand the patient guide and/or the proffesionals management guide that comes with a drug.

    Advice given by people on a forum – well intented, Im sure – per definition is unrelyable and often speculative and leads to more speculation, more uncertainties and less peace of mind.

    How interesting the mechanisms you describe may be they boil down to one conclusion: the statement in the patients folder not to eat grapefuit etc. So the answer to the question you have been looking for on your computer most probably was within 20 feet from your location written down in the patients manual.

    In my opinion the most sensible way to adress these doubts is to

    – Check your patients guide.

    – Contact your practitioner.

    – Search the internet making sure the source of information is sound.

    – Ask fellow patients after making sure to clearly define and articulate the problem at hand.

    I’m sure if you read over this thread again you will see that reffering to the patients guide as a relyable source of information in the first place would have given an answer to all the questions raised a lot sooner.

    That to me is helping my fellow patient in a sensible and effective way: providing or pointing out to good and relyable information to make up their own mind.

    Helping them to be a better advocate for their individual well being, enabling them to better distinguish “nice to know” from “need to know” information, helping them to be a better and well informed partner in the treatment proces.

    About the relationship with your practitioner: if I understand it correctly your strategy is trying to outsmart a proffesional to improve the quality of the communication. If the -perceived – lack in proper communication is a problem than that should be adressed. Share your worries, thoughts and contemplations with your doctor and clearly articulate how you think the relationship could be improved.

    Ben

    P.s. This is a personal opinion based on general observations and not directed at any individual forummember of contributor.

    in reply to: Is surgery a sensible option in this case? #66216
    Jupke
    Participant

    Hello everyone,

    Surgery was succesfull! The tumor was resected completely.

    To do this the tumor – wedged between a large bloodvessel and the bladder – was approached from the bladderside to avoid hitting the bloodvessel.

    To create some clearance for the surgical instrument the “dome” of the bladder had to be removed temporalily.

    Unfortunately within 24 hours after surgey this wound started bleeding into both bladder and abdomen inducing fierce and very painfull convulsions.

    All in all a planned stay at the hospital of 24 hours ended after 12 days.

    Shit happens and every intervention comes with a risk.

    Ben

    in reply to: Mekinist and Tafinlar side effects #66853
    Jupke
    Participant

    Mikers wrote:

    You are always welcome, irisfrohman.

    Since we’ve started this discussion, I wonder how strict should we follow advises having combo drugs:

    – “have pills at least 2 hours after and 1 hour before eating” – what if disturbed this interval? not always but sometimes it’s difficult to follow exact scheduler. Also what if I took pill 1 hour later/earlier than usually?

    – drugs interactions: what medicines and meals should I avoid to prevent decreasing combo efficiency? For example as far as I know, grapefruit is forbidden and plantain grass also.

    Feel free to share your experience based on your doctors advises as well. :)

    Actually answering my own question I can mention this very useful link:

    https://www.gsksource.com/gskprm/en/US/images/gsk_content/TAFMEK/FBP/resources/index.html” class=”bbcode_url”>https://www.gsksource.com/gskprm/en/US/images/gsk_content/TAFMEK/FBP/resources/index.html

    Particularly what I found new there:

    – Don’t store DAB and TRA in the same place since TRA should be refrigerated and DAB kept at room temperature (I kept both in the fridge :( )

    – Dabrafenib is primarily metabolized by CYP2C8 and CYP3A4. Strong inhibitors of CYP3A4

    or CYP2C8 may increase concentrations of dabrafenib and strong inducers of CYP3A4 or

    CYP2C8 may decrease concentrations of dabrafenib. Substitution of strong inhibitors or

    strong inducers of CYP3A4 or CYP2C8 is recommended during treatment with TAFINLAR.

    If concomitant use of strong inhibitors (eg, ketoconazole, nefazodone, clarithromycin,

    gembrozil) or strong inducers (eg, rifampin, phenytoin, carbamazepine, phenobarbital, St

    John’s wort) of CYP3A4 or CYP2C8 is unavoidable, monitor patients closely for adverse

    reactions when taking strong inhibitors or loss of efcacy when taking strong inducers.

    With all due respect but what a non-issue are you adressing here?

    All the patient info that comes with these drugs clearly states how and when they are to be administered, what kind of food you should avoid and what to do when a dose is not taken at the usual moment in time.

    Stick with it and you should be fine.

    About the fevers and chills. For 10 out of the 12 months I was on the combo I had to take 3 grams of paracetamol per day to surpress this wellknown side effect.

    in reply to: Is surgery a sensible option in this case? #66214
    Jupke
    Participant

    Hi JB,

    Thanks! Congrats with the results so far on Yervoy. I’m afraid Yervoy didn’t (yet?) work for me.

    If I may ask, how is the respons on Ipilimumab qualified in your case. CP, PR or SD?

    Im not aware of any official policy regarding the use of anti PD-1 yet. I know of some cases where anti PD-1 was given directly after Ipi had failed. EAP’s for both Keytruda and Opdivo are in place in The Netherlands if I’m correct.

    About the costs of both therapies. To my knowledge a single dose of Yervoy is about twice the cost of a single dose of anti PD-1. The usual therapy with Yervoy consists of 4 doses. From what I’ve read about it anti PD-1 therapies (still?) have an open end where it comes to dose count. Perhaps this could explain the price difference.

    I totally agree with you on that. Regardless of social or financial status both British and Dutch citizens can rely on an affordable and dependable system of Healthcare. The quality of care should be on par, both worldclass.

    Will keep you posted. Promised

    Cheers to my British mate :D ,

    Ben

    in reply to: Is surgery a sensible option in this case? #66212
    Jupke
    Participant

    Hello everyone,

    After re-evaluating the scan the surgeon has come to the conclusion that removing the tumor by laparoscopic surgery is the most sensible way to go.

    The possible suspect lesions in the direct surroundings didn’t lit up on the PET/CT scan at all and are believed to be unressectable given their close proximity to delicate structures and tissues.

    Ben

    in reply to: IPI vs. NIVO Trial opening in March first in Europe! #66656
    Jupke
    Participant

    Catherine Poole wrote:

    And it requires the PDL-1 expression which could really narrow down the numbers. The more we pick it apart the more I am thinking there will be few who qualify.

    Correct me if I’m wrong (Please be patient with me. English is not my native language so I’m aware I could miss some nuances) but the PD L-1 status only has to be established . Wether it’s positive, negative or intermediate doesn’t exclude anyone from the trial.

    in reply to: Keytruda / Pembro – Infusion-Related Side Effects #66443
    Jupke
    Participant

    Hi to all,

    There might another cause for these side effects.

    Browsing trough my personal logbook when recieving the last dose of Ipilimumab I discovered an anthistamica was administered just before the first dose of Ipi.

    This surpressor of infusion related side effects is wellknown for nausea, lassitude and fevers/chills. Had to experience all three of these adverse effects myself.

    The last three infusions only Ipilimumab was administered without any side effects.

    Ben

    in reply to: IPI vs. NIVO Trial opening in March first in Europe! #66654
    Jupke
    Participant

    Given the explicit request for tumor tissue I wouldn’t be surprised this is also – if not all – about identifying potential markers or precursors to predict therapeutic efficacy.

    in reply to: To Mikers et al: Definition of Response Rates for therapies #66664
    Jupke
    Participant

    In addition to the RECIST protocol the immunerelated Response Criteria (irRC) describe how to qualify the different respons paterns associated with immunotherapy.

    The definition of Respons Rate according irRC would be the fraction of subjects that meet the criteria for CR, PR and SD if I’m correct. Furthermore new lesions don’t automatictly imply a negative response.

    in reply to: IPI vs. NIVO Trial opening in March first in Europe! #66652
    Jupke
    Participant

    So this will be a trial to determine if adjuvant therapy following surgery will show some survival benefit between Ipilimumab and Nivolumab in comparison.

    I guess this also will we be compared with surgery only.

    Is this how I should understand it?

    in reply to: Nothing they can do? #66333
    Jupke
    Participant

    Hi Rick,

    First of all I want to express my sincere admiration for the way you keep fighting for every chance there is in this awful situation.

    Like Catherine says the only way to directly apply some kind of containment over this situation would come from inhibitors. Given the situation that would be the best hope to stabilize the current tumor burden while waiting for a positive response from Keytruda, perhaps switch over to Opdivo or looking to get into a (panRAF?) trial.

    Good luck mate,

    Ben

    in reply to: Is surgery a sensible option in this case? #66211
    Jupke
    Participant

    Hello everyone,

    Seems like surgery is viable option.

    PETCT scan from last week showed no new lesions. Known tumors in the upper leg didn’t show any signs of activity.

    Surgeon seems confident tumor in abdomen is resectable. Depending on actual situation after opening the abdomen he will try to locate and remove other lesions which are labeled suspect.

    All in all I’m very happy with the idea that a potentially curative intervention is within reach.

    Ben

    in reply to: Is surgery a sensible option in this case? #66210
    Jupke
    Participant

    Hi Niki,

    Thanks for your input. Hadn’t thought about the level of “tidiness” myself. Will bring that up in the upcoming conversation(s).

    As you mentioned a decision in this matter will be based on possible quotes on probabilities. Asking for certainties would be fooling myself.

    Ben

    in reply to: Is surgery a sensible option in this case? #66208
    Jupke
    Participant

    Funny, this method was already on the “ask urgently” list :)

    Thinking in line with the current effort of pushing back systemic therapy as far back in time as possible the only other alternative I could think of would be radiation. Be it general radiation for that area or cyber knife surgery targeting individual tumors or combining the two methods.

    Just now I was informed that a PET scan is scheduled for next week.

    Ben

    in reply to: Is surgery a sensible option in this case? #66206
    Jupke
    Participant

    Hi Catherine,

    Apart from the risks the option as such is a great one indeed. Thanks for your input!

    More worrying to me is the still untreated pathway from primary or metastasis to this specific location even after surgery. Surgery followed by an adjuvant therapy is one of the things I’m intending to ask my oncologist concerning this aspect.

    Furthermore regional perfusion was briefly mentioned as a possible option to treat the remaining tumors in the upper leg region in the future. As simple and straight forward as this technique may sound in principle I’m afraid it’s a complicated procedure and the associated risks are terrifying from what I’ve read about it.

    To be followed :)

    Ben

Viewing 15 posts - 1 through 15 (of 16 total)