stage 3 ovarian cancer

Panna

I went in for a simple hysterectomy as my I was told my left ovary was enlarged by 5cm. While the surgery, they discovered the cancer and took most of it out. I was then told to get chemo to get the residual cancer cells out. I have had 5 of my 6 chemo treatment and I do not wish to take the 6th as I am suffering with peripheral neuropathy in my feet. I would like to look into Immunotherapy treatments in Toronto if possible.

angel27

See if they can just adjust drugs. They took taxol (as I recall) out of my last few treatments 3 years ago. I have been taking a vit b complex since then and neuropathy is getting better. Slow but sure. 

Panna

Hello Angel 27, yes, they are giving me taxol as well. I will heed your suggestion and consult with them So you still have neuropathy 3 years later? Where is it mainly? It is in my feet more and some tingling in my hands but very little. Thanks for your response!

angel27

I only have a wee bit in my toes. It’s bearable. I keep my feet warm and wear dandies in the house   Try vit b complex 

Flowergirl

Hello @Panna and welcome to the chat site. Sorry you are having trouble with the neuropathy as many of us can relate. Please do mention to your care team as sometimes they can adjust / switch chemo drugs (if suitable for your situation) to one that doesn't have that side effect. Also, you can ask them if B6 is ok for you to take (it helped reduce the tingling sensation for me). I've found many of this information on the drug sheet/information package that one is given prior to chemo and sometimes I forget that the valuable information is there and have to review.

Do you have more information to share on the immunotherapy? 

Panna

No, I have yet to consult with my Oncologist to find out if they have it inToronto and if it would be available to me. I will keep you informed.

kastoyles

@panna I took Vit B during chemo and feel that it did help. Other Teal Sisters have commented on how ice packs during chemo have been beneficial. My oncologist asked me every time about signs of neuropathy. He indicated if it got severe they would adjust the dosage, but I was fortunate to be able to continue with the prescribed treatments. I do have a little

bit of residual neuropathy in one heel and a couple of toes. Some days it's bothersome but definitely tolerable.

Panna

Kastoyles, you mean to use ice packs on my feet? I thought I was supposed to keep my feet warm. Could you elaborate please?

Fearless_Moderator

@kastoyles Vitamin B complex eh? I'm going to keep that in my back pocket for sure.  The peripheral neuropathy in my lower legs and feet is really a problem for me and unfortunately being on a clinical trial I am restricted to things I can take,..vitamin B and other vitamins being one issue. BTW so are Seville oranges and grapefruit...weird eh.  In any event I am expected to come off the drug therapy in the next months ahead so will raise the B complex with my medical support at then. @Panna In the meantime though I do find the more I stimulate my circulation..walking, dancing, massage...the better I am.  

kastoyles

@fearless yes, I was restricted on the amount of Vit C while on Carbo and Taxol. But B was OK. I can't have grapefruit because of blood pressure meds... and I'd really love a good pink grapefruit right about now.

Fearless_Moderator

@kastoyles....I dream about grapefruit now..and marmalade on toast (that's what Seville oranges are used for).  LOL

Flowergirl

Yes, the B6 fo certain helps with my toe tingles
And @Panna, you may need to experiment with warm or cold (packs/hot water bottle/foot baths) to see what works for you - wishing you some relief soon.

Panna

Thank you, I will certainly try it!

Panna

So my Oncologist says that it may take a year and a half for my neuropathy to go away! I am also not going ahead with my 6th and last treatment as my feet feel numb! Does any one know if acupuncture helps? Also is it ok to take hydromorphone to get relief?

Fearless_Moderator

@Panna Just remember that as neuropathy disappears it doesn't happen overnight.  It's a graduated improvement, meaning you don't necessarily have to expect to be in the same state you are for that long. That said, please ensure you always reach out to your medical team to confirm the safety of any procedures or medications. Our group are all patients like you, not medical professionals, and while happy to make suggestions for you to consider, they should always be confirmed as safe in your  own situation.  

Flowergirl

Sorry you are having issues with your neuropathy @Panna... And yes, as @Fearless mentioned, be sure to discuss with your medical team the issue and let them know what is important to you so that they can assist with some relief of these side effects and guide you.

Panna

Well, my feet are really numb now! I started taking Vitamin B. They say that it becomes worse after stopping chemo and will improve. My doctor thinks it is planter fasciitis. I am really confused as to what to do. Has any one tried acupuncture? Love to hear about it!

Fearless_Moderator

@Panna I feel for you, the numbness and the confusion.  I have to admit its been three years now and I still can't seem to get anyone to pay attention to the ongoing numbness and pain I experience.  But I've been remiss in not making it an issue and demanding a referral to a neurologist. In the meantime I assume it's peripheral neuropathy. 

For me, the skin on my legs (mostly lower half but sometimes my thighs when I've been standing for a long period) feel like tissue paper without any nerves.  Just a light tingling.  It's especially prevalent on the tops of my feet and parts of the bottoms.  Yet when I walk or stand, if I step on the minutest pebble or any obstruction it's sends shock waves along my nerves.  I do notice that when I walk or move around a lot it improves. But it doesn't take more than 5 minutes of sitting for it to return full force. 

I hadn't thought of acupuncture so would be interested to hear any replies you get.  I did start with a foot care specialist here last month and just a massage she have my feet really helped.  She's going to look into the success of those machines they advertise where you place your feet on them and they are supposed to stimulate circulation and nerves.  She's attached to our local hospital so was going to check in with one of the specialists there for me. The machines are expensive and I hate the thought of wasting money on something that sounds like it makes sense only to find it ends up in my closet.  

I do know many of my friends say the vitamin B really works, as does foot baths in magnesium (epsom salts). I can't do the vitamins as I'm on a clinical trial and restricted to what I can ingest.  In any event I'm going in for some surgery in about 10 days to get something else in order and once that's over I'll be putting a priority on the legs and feet since they cause major issues with my stability and mobility.  I'll post if there are earth shattering revelations to share...although not optimistic much can be done. Getting a true diagnosis to begin with would be a great start though.

Panna

Hi, Yes I will certainly let you know about acupuncture as my mind is made up 60% to get a few treatments. Also, I have a consult with my Oncologist this coming week and I am really going to grill her as to some honest answers.
I wish you the very best for your upcoming surgery and really hope all goes well.

kastoyles

@panna and @Fearless my family doctor referred me to a neurologist and after testing, he decided that extent of neuropathy I had didn't require any treatment. However, I still do have some issues in one heel and found that massages did help. We have a lady that does foot massage at our Day Wellness Program, but with COVID all the Day Wellness sessions have been cancelled. Fortunately, other than throbbing, and feeling like I'm walking on the hem of my pants, my

neuropathy is 'livable.' I'm interested to see how you make out with acupuncture. I understand that nerve regeneration is VEERRRYYYY slow - mere millimeters per year. While I do feel mine is better, it has a long way to go.

Panna

 not very encouraging! Is your neuropathy chemo induced? I have read different views. CIPN which is chemo induced neuropathy sometimes goes away when the drug is out of your system and some say it takes a year and half etc. etc. No one seems to have any answers so I guess I have to take control and try different methods as mine is quite severe as I just stopped chemo 10th of Aug. Wish me luck!! I will certainly share any measure of success I have.

kastoyles

@Panna Yes, mind is chemo induced. I started to take B Vits at the beginning of my chemo. My oncologist said to give it a try, but didn't say that it definitely would help. I think it did help since I have relatively little neuropathy. He did indicate that it would take a looonnng time for the neuropathy to go away and noted that some might never go away. I'm beginning to feel I'm in the latter category since it's been four years. Having said all that - it definitely has improved since my chemo ended. Every patient is different. Their reaction to chemo and the side effects varies. The length of time it takes to get to a new normal is different for each patient - you will get there! The definition of the word patience should also include recovery from chemo therapy!

BeamBlossom

Hi All, just wanted to chime in with my experience for dealing with neuropathy. I iced my hands and feet during the infusions, i found it better icing my fingers than my feet and now that chemo is finished, I have none in my hands and some in my feet. In addition to the icing, i took Alpha Lipoic Acid 300mgs/day and applied Wise-Men healing balm made of Frankincense and Myrrh with coconut oil every night. I did at one point run out of the balm and was not able to apply it for about ten days and immediately noticed a difference. I  order these from Amazon, the balm comes from the US. The Alpha Lipoic Acid should not be taken the week following a chemo infusion.

Now that I am 6 weeks past my last chemo, I have continued with these, the neuropathy in my feet is improving almost to the point of not being noticeable at all. 

i also took Vit B supplements and have done that for many years,

 

Panna

Hi Beam Blossom, I wish I knew what to do when I was having my chemo!! Any ways, my last chemo was July 20th so it has been 4 weeks now. My feet feel numb and I have a little in right hand fingers. I am worried about my feet most of all. I will consult with my Oncologist about the Alpha Lipoic Acid for sure! Also I would like to use the balm but it seems that it is mostly to relieve the pain temporarily but does not take it away for good. Am I correct in reading that? Although temporary relief is good too! I did start taking Vit. B supplements recently. Also I am 74 years old so age might be a factor too. Thank you very much for your info!

Bluebird

Hi @Panna, sorry to chime in late to the conversation...would get pain shooting down my forearms to my hands..as well as pressure pain and numbness in my feet...I did have accupuncture to my arms ..cant say if it helped or not...i did go on gabapentin  which is for nerve pain...did take away the pain in my arms and i think lessened my feet a little....also good Resourses is your physiotherapist and occupational therapist at your cancer centre if you have one there especially if you have had falls or have balance issues because of the neuropathy...I've heard CBD oil has helped some people with their neuropathy...it just takes time..have an honest discussion with your team..