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I have just finished 12 months of chemo, radiation, last Hercepton on Thursday and ongoing Letrozol. Adding Nerlynx to the list of treatments has been an option for me however my oncologist has just let me know that it now no longer available for free on compassionate grounds by the company. It is being subsidized I believe but I would still have to pay $18000 for the year of tablets if I am eligible. The side effects sound awful :( I would love any feedback from anyone who has been on Nerlynx as to the side effects and thoughts on this. ","customFields":[]},"Conversation:conversation:169679":{"__typename":"Conversation","id":"conversation:169679","solved":false,"topic":{"__ref":"ForumTopicMessage:message:169679"},"lastPostingActivityTime":"2021-02-03T18:06:34.000-08:00","lastPostTime":"2021-02-03T18:06:34.000-08:00","unreadReplyCount":15,"isSubscribed":false},"ModerationData:moderation_data:169679":{"__typename":"ModerationData","id":"moderation_data:169679","status":"APPROVED","rejectReason":null,"isReportedAbuse":false,"rejectUser":null,"rejectTime":null,"rejectActorType":null},"Revision:revision:169679_1":{"__typename":"Revision","id":"revision:169679_1","lastEditTime":"2020-05-31T05:29:39.000-07:00"},"ForumReplyMessage:message:169682":{"__typename":"ForumReplyMessage","id":"message:169682","conversation":{"__ref":"Conversation:conversation:169679"},"author":{"__ref":"User:user:19679"},"revisionNum":1,"uid":169682,"depth":1,"hasGivenKudo":false,"subscribed":false,"board":{"__ref":"Forum:board:hormone-blocking-therapy"},"subject":"Re: Nerlynx","readOnly":false,"editFrozen":false,"moderationData":{"__ref":"ModerationData:moderation_data:169682"},"parent":{"__ref":"ForumTopicMessage:message:169679"},"body":"Hi @Pascoe, I was given this medication after I finished 15 months of treatment for stage 3 grade 3 triple positive bc. I was lucky and my oncologist was able to get it for me on compassionate grounds. The Neranitib made me feel sicker than any of the other treatments i went through ( i was lucky and had very few side effects from both AC and taxol chemo's) I felt nauseated, the inside of my stomach constantly ached and I had gone from enjoying my life and getting better to feeling worse than I did when I had cancer. Each of us is different and responds differently to medications and treatments but knowing how this med made me feel there's no way I'd pay for it. I lasted 3 weeks on this med and have a pretty high tolerance threshold. Working also was extremely difficult especially when the waves of gastro hit, 8 gastro stop tabs a day didn't help much. I believe we all should try whatever possible to help stop a reocurrence but not at the expense of quality of life or financial strain. Sadly my cancer returned in March last year, do I think taking Neranitib for 12 months would've stopped it, I'll never know but 1 thing I do know is I'm glad I didn't waste a good 12 months feeling awful only to get rediagnosed. Wishing you all the best in whatever treatment path you choose Kat x","body@stringLength":"1303","rawBody":"Hi @Pascoe, I was given this medication after I finished 15 months of treatment for stage 3 grade 3 triple positive bc. I was lucky and my oncologist was able to get it for me on compassionate grounds. The Neranitib made me feel sicker than any of the other treatments i went through ( i was lucky and had very few side effects from both AC and taxol chemo's) I felt nauseated, the inside of my stomach constantly ached and I had gone from enjoying my life and getting better to feeling worse than I did when I had cancer. Each of us is different and responds differently to medications and treatments but knowing how this med made me feel there's no way I'd pay for it. I lasted 3 weeks on this med and have a pretty high tolerance threshold. Working also was extremely difficult especially when the waves of gastro hit, 8 gastro stop tabs a day didn't help much. I believe we all should try whatever possible to help stop a reocurrence but not at the expense of quality of life or financial strain. Sadly my cancer returned in March last year, do I think taking Neranitib for 12 months would've stopped it, I'll never know but 1 thing I do know is I'm glad I didn't waste a good 12 months feeling awful only to get rediagnosed. Wishing you all the best in whatever treatment path you choose Kat x","kudosSumWeight":2,"repliesCount":0,"postTime":"2020-06-15T22:57:28.000-07:00","images":{"__typename":"AssociatedImageConnection","edges":[],"totalCount":0,"pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null}},"attachments":{"__typename":"AttachmentConnection","pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null},"edges":[]},"timeToRead":1,"currentRevision":{"__ref":"Revision:revision:169682_1"},"latestVersion":null,"metrics":{"__typename":"MessageMetrics","views":0},"visibilityScope":"PUBLIC","isEscalated":null,"placeholder":false,"originalMessageForPlaceholder":null,"messagePolicies":{"__typename":"MessagePolicies","canModerateSpamMessage":{"__typename":"PolicyResult","failureReason":{"__typename":"FailureReason","message":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","key":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","args":[]}}},"customFields":[],"replies":{"__typename":"MessageConnection","edges":[],"pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null}}},"CachedAsset:theme:customTheme1-1743643394041":{"__typename":"CachedAsset","id":"theme:customTheme1-1743643394041","value":{"id":"customTheme1","animation":{"fast":"150ms","normal":"250ms","slow":"500ms","slowest":"750ms","function":"cubic-bezier(0.07, 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The radio oncologist wasn’t happy with my arm mobility for the radiotherapy so I saw an exercise physiologist from 4 weeks post op. She diagnosed me with cording and it was treated very successfully with stretching and self massage with balls. I think if you do have cording, the earlier it’s treated, the better","body@stringLength":"420","rawBody":"Hi @goingdancing I had a double mastectomy in March 2017 and had to have radiotherapy from 6 weeks post op. The radio oncologist wasn’t happy with my arm mobility for the radiotherapy so I saw an exercise physiologist from 4 weeks post op. She diagnosed me with cording and it was treated very successfully with stretching and self massage with balls. I think if you do have cording, the earlier it’s treated, the better","kudosSumWeight":1,"repliesCount":0,"postTime":"2018-04-25T05:13:20.000-07:00","images":{"__typename":"AssociatedImageConnection","edges":[],"totalCount":0,"pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null}},"attachments":{"__typename":"AttachmentConnection","pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null},"edges":[]},"timeToRead":1,"currentRevision":{"__ref":"Revision:revision:62177_1"},"latestVersion":null,"metrics":{"__typename":"MessageMetrics","views":0},"visibilityScope":"PUBLIC","isEscalated":null,"placeholder":false,"originalMessageForPlaceholder":null,"messagePolicies":{"__typename":"MessagePolicies","canModerateSpamMessage":{"__typename":"PolicyResult","failureReason":{"__typename":"FailureReason","message":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","key":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","args":[]}}},"parent":{"__ref":"ForumTopicMessage:message:62175"},"replies":{"__typename":"MessageConnection","edges":[],"pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null}},"customFields":[]},"User:user:20922":{"__typename":"User","id":"user:20922","deleted":false,"uid":20922,"login":"goingdancing","biography":null,"registrationData":{"__typename":"RegistrationData","status":null,"registrationTime":"2018-04-02T02:41:47.000-07:00"}},"QueryVariables:ReplyList:message:169684:1":{"__typename":"QueryVariables","id":"ReplyList:message:169684:1","value":{"id":"message:169684","first":10,"sorts":{"postTime":{"direction":"DESC"}},"repliesFirst":3,"repliesFirstDepthThree":1,"repliesSorts":{"postTime":{"direction":"DESC"}},"useAvatar":true,"useAuthorLogin":true,"useAuthorRank":true,"useBody":true,"useKudosCount":true,"useTimeToRead":false,"useMedia":false,"useReadOnlyIcon":false,"useRepliesCount":true,"useSearchSnippet":false,"useAcceptedSolutionButton":true,"useSolvedBadge":false,"useAttachments":false,"attachmentsFirst":5,"useTags":false,"useNodeAncestors":false,"useUserHoverCard":false,"useNodeHoverCard":false,"useModerationStatus":true,"usePreviewSubjectModal":false,"useMessageStatus":true}},"CachedAsset:text:en_US-shared/client/components/users/UserAvatar-1742938040000":{"__typename":"CachedAsset","id":"text:en_US-shared/client/components/users/UserAvatar-1742938040000","value":{"altText":"{login}'s avatar","altTextGeneric":"User's avatar"},"localOverride":false},"CachedAsset:text:en_US-shared/client/components/ranks/UserRankLabel-1742938040000":{"__typename":"CachedAsset","id":"text:en_US-shared/client/components/ranks/UserRankLabel-1742938040000","value":{"altTitle":"Icon for {rankName} rank"},"localOverride":false},"CachedAsset:text:en_US-shared/client/components/nodes/NodeIcon-1742938040000":{"__typename":"CachedAsset","id":"text:en_US-shared/client/components/nodes/NodeIcon-1742938040000","value":{"contentType":"Content Type {style, select, FORUM {Forum} BLOG {Blog} TKB {Knowledge Base} IDEA {Ideas} OCCASION {Events} other {}} icon"},"localOverride":false},"ForumReplyMessage:message:169684":{"__typename":"ForumReplyMessage","id":"message:169684","customFields":[],"author":{"__ref":"User:user:21898"},"revisionNum":1,"uid":169684,"depth":1,"hasGivenKudo":false,"subscribed":false,"board":{"__ref":"Forum:board:hormone-blocking-therapy"},"conversation":{"__ref":"Conversation:conversation:169679"},"subject":"Re: Nerlynx","readOnly":false,"editFrozen":false,"moderationData":{"__ref":"ModerationData:moderation_data:169684"},"body":"
Hi @Kat09
Thank you for that info regarding your experience with the Neranitib. Does not sound pleasant at all :( So sorry to hear about your cancer coming back last year, such a journey we go on right from the beginning and to have it come back must have been such a shock. My cancer was Grade 3 with 11 out of 14 lymph nodes involved and it had escaped out of one of the lymph nodes. Because of the lymph node involvement I am thinking I will give the Nerlynx a go. If I can't manage at least I know I have tried everything.
Wishing you all the best in your journey...sending big hugs.
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Hi @Kat09
Thank you for that info regarding your experience with the Neranitib. Does not sound pleasant at all :( So sorry to hear about your cancer coming back last year, such a journey we go on right from the beginning and to have it come back must have been such a shock. My cancer was Grade 3 with 11 out of 14 lymph nodes involved and it had escaped out of one of the lymph nodes. Because of the lymph node involvement I am thinking I will give the Nerlynx a go. If I can't manage at least I know I have tried everything.
Wishing you all the best in your journey...sending big hugs.
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