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Re: Nerlynx
Hi @PV123, Sorry, have just checked in after about 1 month. I have had my ups and downs with Nerlynx. I started on 3 for one week, increased to 4 for one week and have been on 6 for two weeks now. I am very quickly learning what I can and cant eat. I had very bad brain fog and dizziness but that has disappeared. I also have had to take anti nausea a few times. The general feeling crappy has been the worst. I have managed the D really well, taking 2 Gastrostop in the morning and 1 at night. I have also taken the odd extra one at night time if I have needed it which has been about 4 times so far. I have now cut out the night one altogether as I feel I don't need it but wont hesitate to take it if I need to. However, I think I have turned the corner. For the last couple of days I am feeling better. Certainly not feeling on top of the world but it is doable and I think for me the benefits of taking it outweigh the side effects. I have found the pharmaceutical company who send me the nerlynx wonderful. I can ring them anytime and they check in every week. The pharmacist have recommended the probiotic Life-space Triple Strength which I take every day. My doctor has also advised me to take Caltrate for my bones and 1000mg of Vit C and mega zinc 40mg for my immune system as I ended up with a boil, cold sores and a rash. I had to have a dose of antibiotics for the boil but all good now, everything has healed and feeling so much better. Hope this helps. XX :)1View1like0CommentsRe: Nerlynx
Hi @PV123 I am booked in to see my oncologist every 6 weeks. I believe you can take probiotics with the Nerlynx however I will check with him. I have started following the Nerlynx support group on Facebook and a lot of comments about people taking probiotics everyday. There are many comments with people having a really bad time with this treatment but I am hoping to be one of the ones that cope ok with it :)1View0likes0CommentsRe: Nerlynx
Hi @PV123 My oncologist also told me he had a few patients most of the way through their year of Nerlynx and doing well. They started with on 4 tablets and worked their way up to 6...they also had the anti-gastro tabs. He mentioned one had a few issues but they soon resolved so that was a promising discussion. My tablets are in the mail so will let you know how I go. I think I am more nervous about this treatment than any of the others :) .2Views1like0CommentsRe: Nerlynx
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.13Views0likes0CommentsRe: Nerlynx
Hi @PV123 Thank you for your reply. I did speak to my oncologist about the diarrhea and he said his patients were finding it manageable with the anti diarrhea medication they recommended with it for the first couple of months. Some did not even need it....so it seems everyone is different and it affects people in different ways. I am definitely going to give it a good go. I have just heard that if my oncologist had applied before the cut off date we would still have been covered under compassionate grounds to have this free of charge so feeling a little let down at the moment. I guess I should be thankful that the company are subsiding it but $18,000 is still a hell of a lot of money. Looks like back to work for me. Hopefully by the time you finish your Hercepton the PBS have approved it for funding.5Views0likes0CommentsNerlynx
I am Her2+ and E+. 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.303Views0likes15CommentsRe: Dental work while having Chemo treatment
@Pinkcloverss , sorry to hear you are going through a similar situation. I am still nursing my tooth through and fingers crossed still no infection. I am crazy paranoid about rinsing with cepacol (advised by the oral surgeon) after anything I eat and also lots of salty gargling, so just crossing all fingers.29Views0likes0CommentsRe: Dental work while having Chemo treatment
Thank you for your comments. Yes, I hope that I can just keep rinsing and nurse it through. Just terrified of it becoming infected. Very reassuring to hear @poodlejules your extraction went. I am still on Doxorubicin and cyclophosphamide with my three weekly cycles followed by Paclitaxel and Hercepton so maybe it may be better to try and hang in till the Paclitaxel.12Views1like0CommentsDental work while having Chemo treatment
In February I was diagnosed with Early Stages Her 2 + Estrogen + cancer. I have 6 months of chemo, radiation, Hercepton and Hormone therapy ahead of me. I have already had my first 2 three weekly cycles of chemo and have a tooth that is cracked and needs to come out but the dental surgeon said he needs to cut into my jaw :( My oncologist has said he would really like me to baby it through till after my chemo finishes but it is starting to bother me. I was wondering if anyone else on here has has dental issues.417Views0likes10Comments
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