English Community

Hello.  I am looking to connect with members who are being treated with Elahere or who are considering it.  
I am now platinum resistant (after 3 lines of chemotherapy over 3 years) and my oncologist has been discussing Elahere as an option.  My tumour was previously tested and I have the required receptor.   I am waiting for an opthamologist appointment   

I am interested in hearing from anyone who has been considering Elahere or who has started treatment. 
Thank you!

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Hi @cynthiaj ... I was checking back over some posts and saw that there hadn't been any responses to this so I wanted to respond and get the post active again. Perhaps there is someone out there who is taking or is considering being treated with Elahere who may have missed your first post. I know it's in its "infancy" in terms of usage in Canada. Hopefully there is someone else out there in our community who has been approved for use and/or is considering.

#Treatmentandsideeffects

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I have it waiting in the background.  Side effects sound wild.  Some women did really well on it and others found it to be too much or it didn't work.  But those who

respond to it get some extra time so I say try anything when the time comes - you never know.  Can you get a second opinion from another oncologist to 

help you decide? Good luck!

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I don't know anyone but I am on an E layers Facebook group. You can ask to join and talk with lots of people there.

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I would love to know if you started it and the outcome!  Hoping for good news. Eye issues? I expect using someone who understands the serious eye issues with this drug would be critical.

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Hi @cynthiaj ... did you get any additional information to help inform your decision regarding Elahere? I believe you were going to start today. I hope you were able to gather information that has helped you feel better about your decision. Please let us know. 

#Treatmentandsideeffects

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Hi there,

My name is Mysty and I'm also preparing to start Elahere. I have some reservations about the side effects to the eyes that I'm concerned about. I received a supply of eye drops from Abbvie, which is the maker of Elahere. (The eyedrops were delivered to my community mailbox and they froze in -19 C weather. The box says to keep them between +15-25C. I called Abbvie to let them know the drops they sent were ruined in freezing temps and they sent another supply to my freezing cold community mailbox. I called again to explain that they will need to send them some other way to avoid freezing temps. Stay tuned!)

The Elahere website provides quite a bit of info about eye care, which is great. That said, I'm hoping to hear from any women who are currently on Elahere and what their experience has been like. 

Here's the link to Elahere's info about eye care, including an eyedrop dose reminder:

https://www.elahere.com/eye-care#side-effects

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Hi @Call_me_4828 and welcome to OVdialogue. It was also nice to meet you on this week's Teal Tea 😊  We are so glad you found this site and this strong, courageous and amazing group of Teal Sisters. I also appreciate that you 'tagged onto' an existing thread on Elahere. Hopefully the Teal Warriors in here will be able to share their experiences. I know it's so newly approved that you among others, will likely be the ones forging the path forward on this and helping to educate us. I'm wondering @mfallis_OCC if you are aware of a group, via OCC, that is connected or engaged with Elahere users? Just a thought.

When are you planning to start Elahere? I know you said you were preparing to start. Also, will you medical team be monitoring you? I'm curious as PARB takers such as me (Lynparza) are monitored so I figured you would be with Elahere. Just curious what the protocol might be for that.

Again, welcome to the group and thank you for sharing. I hope you will be able to get the information you are seeking. 

P.S. Sorry to hear about the eye drop delivery fiasco. Sometimes common sense just isn't so common 😗

#Treatmentandsideeffects

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Hi Friends, I am sorry for not replying sooner to this thread about Elahere. I met last week with an ophthalmologist at St. Joe's Hospital in London, ON. He told me that he has seen about a dozen women in the last month for their baseline eye exam prior to taking Elahere. The first exam was very quick, but it did require taking those drops that dilate the pupils. (If you haven't had those drops before, be sure to bring your sunglasses because the brightness of the sun and/or snow can be very hard to take.) My eyes were healthy, but a little on the dry side and he suggested non-preservative, lubricating drops for the dryness. (My opthamologist gave me a couple of free samples of the lubricating eye drops. From what he told me, any lubricating eye drop that does not contain preservatives will do the trick.) I asked if he was responsible for prescribing the steroid eye drops that are an important part of treating the eye side effects from Elahere, but he said that my oncologist is responsible for prescribing those. 

The eye side effects from Elahere can sound pretty scary, but my sense from the patients reviews that I've read is that real diligence is needed when following the eye drop regime. If you follow what is advised on the Elahere website a patient will be putting eyedrops in her eyes at least 10 times a day for the first 4 days (6 steroid + 4 lubricating), as well as the day prior to treatment, and at least 8 times a day for another four days (4 steroid + 4 lubricating). That's a lot of eye drops to stay on top of, but if you do, you can expect fewer eye issues.

I was pretty apprehensive about starting Elahere because my quality of life will be severely reduced if I'm unable to see relatively clearly. Now that I know that I can probably keep a lot of the harm away by strictly following the eye drop protocol, I'm less worried. It's in my hands to lessen the harm. I still haven't been prescribed my steroid eye drops, but I will put another call in on Monday to try to get that moving along. My hope is that I will be able to start my treatment on February 27. 

#elahere #Treatmentandsideeffects

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Hi there! Thank you for the post, I was advised that my eyes were a little on the dry side as well. I will be calling tomorrow to see about the steroid drops. Do you have a start date for your treatment or are you waiting for scheduling? I did follow the link to ehahare that you provided in an earlier post, thank you for that!

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@Call_me_4828 thank you for such a comprehensive post. I'm sure this information is going to be of great value/interest to others exploring Elahare. I hope the eye drop protocol is as helpful as you describe. Obviously not the same, but I remember someone recently who had cataract surgery and they had a heapful of eyedrops of multiple kinds that they had to take for a few weeks following the procedure. She set reminders on her phone which she said was very helpful for keeping on track.

Good luck starting treatment this week. Please keep us posted as you progress. I'll be thinking of you!

#Treatmentandsideeffects

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Hi Friends, I have an update on my previous post. First, my treatment on Elahere was supposed to start today, but it has been postponed to next Thursday because no one scheduled my appointment! I found that frustrating after all of the follow-up that I did to keep everything on track. Sigh.

Second, the website where I gathered my information about steroid eye drops when taking Elahere is the American website. I learned just yesterday from my oncologist that Canada does not follow the same protocol as the Americans. My oncologist didn't know why there was a difference in protocol between the two countries so he wasn't able to explain that to me. He is meeting today with representatives from.Abbvie (the company that makes Elahere) and my ophthalmologist, as well as some other oncologists, so hopefully he will have a clearer picture why there is a difference between the two countries. I will update my post as soon as I learn more. Stay tuned!

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Hi, I am to start Elahere next week but no appointment has been scheduled. I think the infusion date indicated on the submission was tentative. I'm reaching out asap, thanks for your post. You're not in Ottawa are you?

Best luck! 🤍

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Hi @Vonnie_613 did they finally get a date set for you? I'm guessing you have all the eyedrop process in place too. Please keep us posted on how things go. Will be thinking of you and sending strength hugs your way 🩵

#Treatmentandsideeffects

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Hi @Call_me_4828 well I can only imagine how frustrating that would have been. Especially since you'd done all the legwork on the follow-up. Hopefully they figured out where the ball was dropped on their end and that it doesn't happen again.

Thank you for keeping us all so well informed and educated on the various elements of Elahere especially the eye drops. How crazy however that we have different standards country to country. Having said that, I know there are different standards in so many things which I can't figure out e.g., protocols for pre-meds for CT's, types of chemo approaches etc. I'm always curious who is more correct in their approach? Maybe no-one. Who knows. I'm pleased to hear however that your oncologist is meeting with the various representatives and doctors. 

Again, thank you for sharing all your information. I know how appreciated it is. I hope you are continuing to be ok, especially with the hoops you are going through. You've got this!

#Treatmentandsideeffects

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Hi Cynthia, I am platinum resistant after two lines of taxol and carboplatin. I was also on olaparib for 18 months at which time there was progression. Diagnosed late 2022. I have made the decision to give elahere a shot and have just had my opthamologist apt this Thursday and have been cleared for treatment. She reccommended over the counter eye drops Systane Ultra. I believe funding is the next step and I am to begin treatment March. I'm in Ottawa andd the Cancer Center was unable to give me any referance material which is why I'm here hoping to connect with anyone that is presently recieving treatment. Apparently I'll be the first in Ottawa. 

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Hi @Vonnie_613 and welcome to the forum. How strange that a cancer centre couldn't provide any reference material. Hopefully the ladies in this forum can share whatever they've gleaned as we all know individuals such as yourself and others considering this, are forging a path ahead for so many others. I know @Call_me_4828 mentioned there's an Elahere website. Did your oncologist direct you there? Hopefully it contains some helpful information.

@BellaDonna1959 are you still connected to the Elahere Facebook Group? Is it an active group? Perhaps it's an option for @Vonnie_613 and others to connect with individuals utilizing the therapy and/or who can share information that seems to be scarce.

I appreciate everyone sharing everything they can as they explore and begin this treatment. The more we know, the more powerful we become.

#Treatmentandsideeffects

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Hi, thank you for the reply much appreciated

Message:
Sent: 02-21-2026 11:32
From: Alwayslearning
Subject: Elahere

Hi @Vonnie_613 and welcome to the forum. How strange that a cancer centre couldn't provide any reference material. Hopefully the ladies in this forum can share whatever they've gleaned as we all know individuals such as yourself and others considering this, are forging a path ahead for so many others. I know @Call_me_4828 mentioned there's an Elahere website. Did your oncologist direct you there? Hopefully it contains some helpful information.

@BellaDonna1959 are you still connected to the Elahere Facebook Group? Is it an active group? Perhaps it's an option for @Vonnie_613 and others to connect with individuals utilizing the therapy and/or who can share information that seems to be scarce.

I appreciate everyone sharing everything they can as they explore and begin this treatment. The more we know, the more powerful we become.

#Treatmentandsideeffects

Hi I have been using Elahere Cancer Support Group & Alternatives on Facebook because it is the next treatment in line for me.  I am watching this thread to see.  Steriod drops are important is what I've read there.  OHIP should pay by the way.  

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@BellaDonna1959 thanks for sharing the specific group.

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My treatment with Elahere won't start until I've tried to go back on Taxol and Avastin once I am cleared to re start Avastin after a bowel blockage.  It's my next one in line. Good luck!

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Hi again, Requests for funding will be taken care of by your oncology care team when the required criteria are met. In regard to funding for Elahere I don't think age is a factor. I see you are also in Ontario the following link may shed some light on funding for injectable chemos:

https://www.cancercareontario.ca/en/cancer-treatments/chemotherapy/funding-reimbursement

Hope this helps 

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Hi @Vonnie_613 .... I wanted to check in and see if your treatments have started and how you are doing? I know you had a few hurdles to overcome (which you shouldn't have). Was thinking of you so wanted to check in. I hope you are doing well.

#Treatmentandsideeffects

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Hi Cynthia. My name is Dani and  I started treatment in January of this year. Days before my 3rd treatment I developed Ocular toxicity and treatment is currently on hold for 2 weeks while we wait for my corneas to heal. I see well enough to post this but am not yet healed. Texting is still difficult as things are very blury . I can not see well enough for spellcheck.  I'm happy to answer any questions you may have. 

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Thanks for posting Dani. I have a few questions if you are able to answer them and it’s not too onerous on your eyes. First, were there any other signs, aside from blurry vision, that you experienced? Second, were you prescribed steroid eye drops as part of your treatment? Were you using lubricating eyedrops as part of your regular eye care during your first two Elahere treatments?

Thank you so much and best wishes on a speedy recovery.

Mysty

Thank you Dani. I hope your eyes are feeling better soon and all the best for your ongoing treatment.

Mysty

Hi @danidelbiondo ... I am not sure if your recent posts on Elahere are your first posts to the forum but if yes, then I wanted to welcome you to OVdialogue. I am NOT expecting you to reply considering the eye issues you are having. I just wanted to thank you for lending your voice and treatment experience to this site. As you can tell, there is a need for information regarding this drug and sharing via OVdialogue will definitely helping others who will travel this road.

I hope, other than the eye issues, that the treatment is going well. 🤞

#Supportandencouragement #Treatmentandsideeffects

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Thank you. I first posted 6 or 7 years ago.  I was diagnosed at stage 3c for HGSOC, had my first surgery in January of 2019.  I was given two, possibly two and a half years. 

I have been treated with the standard taxol and carbo, taxol carbo and Avastin. A few years of NED. Surgery again when it spread to my spleen.  Carbo taxol again. 2nd recurrence,  carbo taxol again.  Then Niraparib.  Spread to my colon, carbo taxol again. This time it did not work. While recovering from chemo I had emergency surgery for an obstruction this past June. A scheduled surgery in August to remove all visible disease in my colon. Now Elahere.  It amazes me what the human body can tolerate. 

My message today is not to let statistics  drive your fear. As I fondly say to my family " I'm still standing ".

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Hi @danidelbiondo ... thank you for returning and sharing your story. What a journey you've had. I truly appreciate your message on not letting statistics drive our fear. You are certainly a testament to that. It is so frustrating when surgery plus chemo should eradicate this disease in our bodies but it can be such a persistent monster. I'm so glad you have been able to fight it at every step and I hope that Elahere is the effective treatment you need to beat this. 

Thinking of you and send lots of positivity your way 💙

#Supportandencouragement #Treatmentandsideeffects

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You are amazing, an inspiration. I have just begun Elahere, diagnosed stage  4 Ov and early stage colon in 2022. Surgery, carbo/taxol, Olaparib, carbo/taxol again which has brought me to Elahere and hope.

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🤞... thank you for continuing to share @Vonnie_613. Sending thoughts of hope and positivity your way.

#Treatmentandsideeffects

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Hi folks,

I'm just checking in on the Teal Sisters here who have been treated with Elahere and/or were just about to start treatment. I wanted to see how everyone was doing. If you are able to drop a line with an update that would be great. I've been thinking of all of you. 💙 @cynthiaj @Call_me_4828 @Vonnie_613 @danidelbiondo

#Treatmentandsideeffects

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Good morning friends. I sit here writing my reply with blurry vision. My eyes started getting blurry about one week after my second dose of Elahere. At first it seemed like I had smudges on my eye glasses (which I wear from the time I’m awake until I go yo bed at night). It developed into what felt like dry, scratchy eyes and blurry vision. I contacted my ophthalmologist right away, but it took a couple days to hear back from him because of the Easter long weekend. Initially I was using steroid eye drops (dexamethasone) six times a day, but I’m now using them every two hours with a steroid ointment at bedtime. I’m scheduled to see my ophthalmologist again next Thursday.

It took about a week to start noticing an improvement for the blurry vision. It’s still blurry today but not as bad as it was when it started. The dry, scratchy feeling went away almost as soon as I started the steroid eye drops.

I am scheduled to see my oncologist tomorrow. I suspect that my chemo treatment scheduled for this Friday will be postponed to let my eyes get back to normal. I will post again soon to keep you all up to date on my treatment.

I will add that I have found this side effect to my eyes to be the most challenging side effect by far. I spend a lot of time reading and doing other activities that require the use of my eyes. It was very difficult to keep my spirits up while I was unable to partake in my regular activities. I carried on with my regular exercise, but you can only do so much of that. Audiobooks were good friends to me this past week.

Wishing you all the best,
Mysty

Hello all
The information on Elahere says the before and after treatment, eye drops are required. Were you not given them?
Also interesting that you are on Elahere.
I am a patient at Princess Margaret Hospital and I qualify for Elahere, however am told it is not yet paid for.
Where are you and is your treatment paid for?

Pat
Sent from my iPad

@danidelbiondo thank you for sharing. I'm glad they've been able to continue with your treatments while managing the eye side effects. I had my dosage from my front line chemo reduced when I reacted to the medication. I am putting faith into the system that your reduction will still provide the effectiveness of the medication. I hope future treatments continue well and the eye side effects remain manageable. Please keep us posted. Sending positive energy your way!

#Treatmentandsideeffects

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Hi @Call_me_4828 and thank you for the update. I'm so sorry to hear about your eyes however am glad to hear you got fairly quick relief from the scratchiness. Also glad the blurriness is improving and that you have an upcoming appointment to try to address further. I'm glad you were able to take advantage of the Audiobooks. Thank goodness for them and Podcasts. 

Hoping this week will bring some additional resolution for you.

#Treatmentandsideeffects

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Hi All,

As predicted, my third Elahere treatment was postponed due to my eye issues and the neuropathy I’m experiencing in my hands and feet. I’m scheduled to go back to my oncologist in two weeks.

Unfortunately my CA125 increased from 194 to 250. That was unwelcome news because it may suggest that Elahere doesn’t work for me.

I have a CT scan scheduled for April 27 so hopefully that will show that my tumours are shrinking. If not, we will have to decide whether to carry on with Elahere with the hope that it just takes a little time to start working for me or stop this drug and try something else.

I would hate to find out that Elahere doesn’t work for me. As much as I don’t like the eye issues, I would still like to reap the benefits of the drug.

Thanks for “listening” toute le monde!

Thank you so much Dani. Your kind words and information have given me hope and something to look into. I appreciate you.

Mysty ☀️

@Call_me_4828 these are the times when I truly despise the CA-125. It can very much mess with our heads. I agree with @danidelbiondo that the CT scan is the gold standard of information. My oncologist has told me on numerous occasions that she wishes we didn't use the CA-125 as much as we do as it can cause a lot of anxiety that isn't always needed. I belong to a Facebook page for Lynparza/Olaparib users and so many of the women have had increases in their CA 125's and yet, it has not be the definitive answer of what is going on.

Let's hope the scan yields the information you need to determine your path forward. Will certainly be thinking of you in the days to come 💙

#Treatmentandsideeffects #Supportandencouragement

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@danidelbiondo this is exactly my point with the CA 125. Thank you for sharing. It's definitely a piece of information however not the penultimate factor in what's going on. I understand that 3am CA125 post. It's why I really do not like the Friday PARB clinics at PMH since the CA125 is never available for the appointment. However, it's also a reinforcer of my oncologists point that she's looking at all the labs, and not focused completely on the CA125. That said, my heart skips a beat when the result posts and yes, it messes with my head until that point 🤬

I've been ok with the Olaparib. I'm 22 months in. My fatigue/nausea were all at the beginning for about two months. Then that passed. I have a lot of unexplained abdominal pain. Could be the Olaparib. Leading thought is it's scar tissue/adhesion. My surgery was over 6 hours and I was opened way up for them to complete it. I have a lovely vertical scar from just under my boobs to my pelvic bone as my reminder. My sigmoid colon has narrowed from the scar tissue and that could be causing the issues. CT's over the course of my treatment have shown I continue to be NED. If the worse I have to endure is abdominal pain and yet I remain NED, I'll take it. 

Thank you for continuing to share your voice and your journey!! 

#Treatmentandsideeffects

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Thank you @Alwayslearning — your reminder not to place too much weight on CA125 is a good one. It also brought to mind something that I was told when I started this journey and that is to weigh in how I’m feeling. Aside from the eye issues and neuropathy, I’m feeling quite good physically. I will keep taking one day at a time and sit tight until I get my CT scan results.

Mysty ☀️

Good morning! Boy it's hot here in Ottawa and no relief in sight! A little update for now re my current treatment: I had my 5th elahere or merv infusion last week I've had one bout of abdominal pain with projectile vomiting which passed in 36 hours. No eye issues, drops 4x's a day sometimes 5 if I wake during the night. The first 3 treatments were fantastic, I felt great. The 4th is when I ran into trouble. All good now. 

I've had CTs and xrays. CTs showing shrinkage in all but one tumour, CA125-24 down from 35. One onc informed me that radiation would be necessary for the growing tumour while another said only if it gets quite large. 

As long as I don't develop sides such as eye or breathing issues I will be on this drug for life. All in all the news has been positive and I am learning to live with it after being diagnosed stage 4 in 2022.

BTW I add protein milk to my smoothies, Natrel makes it ☺

Huggs!

Hi Vonnie  - so glad it is working! I am in Ontario.  Did they pay for your Elahere with special consideration?  It's now not covered I've been told.  Any idea what they told the drug company or OHIP to get it approved? It's my next in line treatment (or was...)  What is 'merv'?  Thanks so much!

Wow how lucky you got to have Elahere was it special treatment for you?
I was approved but drug was turned down for me
Seems odd that some are getting Elahere and others not
Pat

Sent from my iPhone

Hi, Abbvie ran a compassionate funding program which ended March 2026. My hospital got me in just in time. Merv is what the drs and nurses are calling elahere the technical name is a mouthful. I am hoping for you and others. 🙏

@Vonnie_613 I hear you guys had one heck of a rain storm yesterday! It's definitely hot here on the shores of Lake Erie as well however we can escape for momentary relief down to the water throughout the day.

Thank you for your treatment update. I'm so glad to hear you were able to continue even with the current issues regarding Elahere funding. So sorry to hear however of your side effects. Vomiting of any kind is gross but projectile sounds horrid. Glad it has passed. Also your CA125 and CT results sound great except that one pesky tumour. It's always interesting to see the difference in opinions of doctors. Do you have a choice on which route to go (radiation or non??).

I'm glad Elahere is working for you and you can continue. Thank you for continuing to share your story. Also that you were diagnosed at Stage 4 and continue to be such a strong Teal Warrior is a testament to never giving up. Hugs to you!!

Thanks for the smoothie idea as well. I didn't know there was protein infused milk. That's why I'm "alwayslearning"😁

#Treatmentandsideeffects #Healthandwellness

Thank you for the kind words and support. Abbvie ran a compassionate care program providing the drug to patients that qualified and met the deadline March of this year and the hospital got me in just in time. I of course feel guilt and sadness that the talks are preventing countless individuals from trying this new drug and hoping that things will change soon!

@Vonnie_613 I am so glad you were able to qualify for their compassionate care program. You are clearly benefitting and for that I'm thankful.

Yes, it is horrible that many others are being prevented public health funded access and agree, let's hope those who have the power to effect positive change with access to this drug will get themselves sorted sooner rather than later.

Sending continued support for your positive progress. 😊

#Supportandencouragement

Good morning! Raining in Ottawa again ☺

It's been awhile since posting so here goes.....I am scheduled for my 8th treatment of Elahere (Mirv) this coming week and currently waiting for scan results which seem to take forever. Scanxiety is real! I have pretty good intuition and expecting that this treatment may be coming to an end for me. No eye issues but I am having throat and bowel issues and foot neuropathy has worsened. My follow up and bloodwork is this coming Tuesday so that combined with scan results will provide a better understanding. I'll post again soon. Huggs

Thank you!

Hi @Vonnie_613 

Thank you for your update. Scanxiety is the worst!! Hang in there.

Sorry to hear you are having issues with Elahere. I'm guessing the throat & bowel issues and neuropathy are side effects. It's just never a simple process is it!?

Hopefully you'll get the answers you need on Tuesday with bloodwork and scan results. I'll keep my fingers crossed that the news is on the positive side and perhaps they have some tricks up their sleeve for addressing the side effects. 🤞

#Treatmentandsideeffects 

Good morning!

Still no scan results! I did meet one of my favorite oncologists yesterday and have been advised to go ahead with tomorrows treatment which will be reduced to 80%. Once the scan results are recieved I will be booked in for another followup to discuss. On a happier note bloodwork was very good so fingers crossed. I don't know about anyone else but sleep is a carrot I can't seem to catch 🙃.

Huggs and hope to all!

Hi @Vonnie_613 ... I hope the treatment went well today and I'm glad they were able to continue. They certainly have tricks up their sleeves don't they! I had my chemo dosage reduced by 10% for my second infusion in 2024 because of the side effects I experienced including peripheral neuropathy. So I'm glad they have a plan.

Definitely frustrating about the lack of scan results. They are clearly doing a thorough job of reading them!! Also YEAH that the bloodwork was very good. I'm crossing my fingers that the scan will come back with positive news too. 🤞🤞

As for sleep...it remains elusive for me too. I typically have two good nights followed by a few bad nights. So, I celebrate the good when it happens!

Sending you hugs too!

#Healthandwellness #Treatmentandsideeffects #Supportandencouragement

Hi @Alwayslearning

Just finished my 8th treatment 2 hours ago. In a couple of hours I will have trouble walking which usually lasts through the night, there will be trouble sleeping for a couple of nights due to premed Decadron. I received scan results late yesterday afternoon funny in that what had previously shrunk has grown and the 1 instance of growth has shrunk. I am scheduled for followup Sept 15 to discuss scan results.  For the neuropathy I am thinking I will give the cold treatment a shot I've seen a few boots on Amazon which I may look into. I'm wondering if anyone has had any luck with cold apparently neuro can get pretty bad. Time for a nap 😂.

Huggs!

Hi @Alexson,

Yes the walking, balance and dizziness typically ends within a day. As for the bowel and throat issues I was also diagnosed with colon cancer which was caught early and along with a complete hysterectomy I received an iliostomy which was reversed in 2024. I was told bowels may take years to return to normal long story short it is difficlut to say whether Mirv is the culprit (in my case). Note well diarrhea and constipation are known side effects of Mirv.

For the throat it's important to note that I have a moderate sized hiatial hernia cause acid reflux, I am on medication but it seems to have worsened I'll see my GP for direction. The Mirv may be a cause of the worsening effects. Sorry I'm afraid that's not much help. 

My treatment today was decreased to 80% so I'll be watching to see if these issues decrease and may be able to attribute them to Mirv itself. My main concern is neuropathy since I have been advised that some patients are no longer able to walk.

I will keep you posted if you like. I've been keepng a journal since 2022 which has been extremely helpful something I would highly reccommend. (Forgive the spelling brain fog is a bugger 😁)

Huggs

Hi Vonnie_613

I am sorry you are experiencing neuropathy and have also had it from the onset of treatment in 2022. I haven't used the cold boots but found Dr. Ho's Foot and Leg stimulator very helpful. Also elevating my legs and acupuncture. In my 5th year most of the neuropathy has gotten better as I continued walking and found runners with good padding. My hands have also gotten better when I am not in active treatment but often sit with my hands wrapped in a heating pad. Reducing the dose was also very helpful.

I wonder about your Ilioscopy was it difficult to manage?

Kindly,

Florence

@florence2022 Hi there, thanks for your input much appreciated! I do have a Dr. Ho foot stimulator but find the positive effects short lived. I also picked up a heated foot bath jury is still out on that one 😊. I haven't tried acupuncture good idea, there's also something called red light therapy that may be worth looking into.

Re the ostomy it's not something I wanted but something that needed to be done. There was plenty of good care by experts from the hospital to my home. Several home visits consisted showing how to fit and change the pouch to being supervised while changing it myself. Showering can be a bit worrysome so I purchased a waterproof cover, later I was able to shower with the stoma exposed which was great. If this is something you may be facing there is a great deal of information out there, even on youtube. Lastly there is a grant for assisted devices the specialists at the hospital filled out the form for me. The supplies can be quite expensive.

So all in all it was quite managable and it gave my bowel time too heal. P.S. Food can be quite tricky lists of what to eat and what to avoid were provided.

Huggs

Thank you@Vonnie_613 I think the RLT is a great idea as well. My Naturopathic oncologist offers it and it appears that patients get good results strengthening their overall health.  I wanted to try infra-red saunas to clear toxins in the tumour environment but find scheduling everything a challenge. When I had acupuncture with a therapist who knows how to treat neuropathy it worked out well and provided pain relief.

Many thanks for the information on the ostomy, it is not my choice but the alternative of a life threatening bowel blockage is grim.🥲 Reconnection may not be possible but there is always hope.

Kindly,

Florence xx

I find if my feet are cold my feet problem increases!!

Pam Black

@PMB ... that is very interesting. It's amazing how differently all our bodies are in terms of their reactions!

Hello @Vonnie_613 ... it's 12:15 am and it's one of my sleepless nights so I thought I'd hop onto OVd. I remember all the pre-chemo steroids and the alertness they caused (plus a very flushed face). Hopefully sleep is not as elusive for you following your most recent treatment. 

I'm glad you got the scan results however clearly there's more to be investigated relative to that. I'm sure Sept 15th can't come soon enough. As for neuropathy, I experienced it badly following my first round of pax/carbo and couldn't walk. In fact I couldn't put my feet down for more than 30 seconds without them going numb. That lasted for about four days. I just re-read my notes and saw that elevating my legs helped a bit to reduce the numbness. It was also advised I take B12. Of course I'd check with your medical team before taking anything.

For remaining infusions I put ice in Ziploc bags and kept them on my feet and hands during the infusion. I did 15 min on and 5 min off. I didn't use ice following my infusions however whose to say it won't work. I was told by my gyne onc that there was really no scientific evidence that icing during the infusion worked and yet, my PN reduced to almost nothing by my 3rd infusion. So I say give anything you can a try although if you can handle the 'basic' route of ice in Ziploc bags, perhaps try that before you invest in the booties. Alternatively, buy some bags of peas and use those (they shape nicely to the feet). They can be refrozen and you can reuse again (not for eating of course 😬).

I hope you were able to nap and I do hope by tomorrow that your walking has improved. Sending you a big hug.🤗

#Treatmentandsideeffects #Supportandencouragement

Good morning @Alwayslearning!

Welome to see your early post I've been awake for most of the night as well and will soon be red faced as par for the course.Thank you for the cold treatment input, very helpful. I had shyed away from it when my onc suggested it since last winter I found the cold made my toes quite painful, however yesterdays onc nurse suggested an on and off system. What I've seen done is they fill gloves with water freeze them and then wrap the tootsies. Then the patient is kept warm with numerous blankets. I will give it a go, the Elehare or Mirv treatment is only an hour so I may be able to tolerate. Once again thank you for the enouraging words.

Apparently I am in a story telling mood it's 4:45a.m. 😁

Huggs

Hi @Vonnie_613 ... sorry for the sleepless night 🙁. Hopefully the icing will help. 🤞

I hope you get some rest today.

#Supportandencouragement #Treatmentandsideeffects

Hi!

No worries re the sleepless night, you are in familar territory. Before trying the ice during treatment I will try your frozen pea idea at home just to see how painful it might be. Thank you for that, I've also been taking b12 it seems to be the only supplement that may assist nerves.

Thanks again, happy weekend 😊

@Vonnie_613 just don't eat the peas afterwards 🤪 Seriously I hope it works for you.

#Supportandencouragement

@Alwayslearning  Picked up the peas haven't done the experiment yet, tomorrow is another day. I won't eat them 😅 although I am on the dreaded seefood diet 🤭.

@Vonnie_613 to be honest peas are my least favourite veggie so using them as a mouldable ice pack sounds like the right thing to me 🤣. I hope they help. #Supportandencouragement