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New member/ Neuropathy

Luv2paint
Posts: 5
Joined: May 2014

Hello everyone, 

I just shared some news regarding Neuropathy & shoes on the Ovarian Board. I have been reading the blogs for 4 years now but have not joined until now.

Quick update, April 1, 2010, awoke to bleeding after 10 years menopausal. It was Easter weekend & could not get appointment until following Monday. On  Mon. had a biopsy, same day had an ultra sound. Tuesday received call from nurse that Doctor wanted me to come in , ultra sound showed something suspicious, the biopsy said I had Uterine Cancer. Saw Doctor on Wed, referred to GYN/oncologist, scheduled for surgery May10.  the oncologist even sent to USC for confirmation of the diagnosis, all confirmed the diagnosis, Uterine Cancer. Had Da Vinci Robotic Surgery on May10, Hysterectomy Uterus, Ovaries, Cervix, fallopian tubes, I did NOT have the Omentum removed, neither did I have Lymph Nodes removed. The Lymph Nodes were not removed by request, only if the Doctor saw that it would be completely necessary. The surgery went very well, I was home the next day, could not believe i had surgery, felt great. A few days later was told that further biopsies of the Uterus found another cancererous "growth" this time was diagnosed "UPSC Grade3 ".In meantime I did go for a 2nd & 3rd referral, the oncologist even sent to USC for confirmation of the diagnosis, all confirmed the diagnosis, UPSC .  After talking over consequences etc. opted to not have further surgery but to have Chemo/ Radiation treatment only. From June 2010 to May 2011 completed courses of Chemo & Radiation. I believe it was 6 courses of Chemo spread out 3 weeks apart & then 6 weeks of radiation, 1 time per week. It all seems very vague to me now, I had a few little"glitches" along the way. The Neulasta shots did give me a lot of pain. I do not recall any problems with Radiation. Todate my Ca-125's have all remained in the low #'s, my scans have not shown any evidence of disease. My bones have suffered I am sure, presently i am being scheduled for L hip replacement, severe arthritis in hip. Now I am 4 years NED! :)

here is the info I shared on the Ovarian Board:

I too have neuropathy in my feet & finger tips. About a year ago I found some shoes @ Sears( I also have purchased them on line @ Amazon) they are the most comfortable shoes I have ever worn. I stopped wearing sneakers & have been wearing these ever since. They go with any outfit, come in different colours. They are called "Weekends" or "Payday" & are made by Khombu. For some reason Sears does not carry them in my local store anymore, but you can order online & then pick them up at a Sears store. I like the "Mary Jane" style, they have a strap across the top, but I also have the "open" style. I just have a problem with keeping shoes on my feet, I cannot wear "flip flops" anymore for that reason. They are made of woven elastic & are lightweight, feel like slippers on the feet. I am sure you will feel the benefit of these shoes right away. The price is right too, they sometimes are on sale, I have never paid over 30.00.:)

 

I thank YOU ALL for sharing your info & advice, I have read & practised a lot of the recipes etc. I drink Alkaline Water, use Olive oil/Turmeric etc etc.:) Thanks to Claudia, Linda P & all the other ladies who have given so much time to this board. I am glad to see Claudia back on board, I love her sense of humour. :) 

Mo.

 

 
NoTimeForCancer's picture
NoTimeForCancer
Posts: 641
Joined: Mar 2013

Welcome Mo.  We never knew you were here but so glad to hear from you and that you shared your story with us.

Luv2paint
Posts: 5
Joined: May 2014

Thank you. I hope that others will find these shoes a help with the Neuropathy, they are a blessing to me. 

mmfintx's picture
mmfintx
Posts: 17
Joined: May 2014

But not for me...yesterday was told biopsy results would return in 7 to 10 business days.  Is there a reason for that you know of?  The NP said she would keep my file on her desk and call me personally when the results came in.  Jeez, after reading your post, this biopsy result thing could be done a bit sooner.  Everything happened so fast that yesterday, went in for abnormal bleeding, had an exam, had an ultra sound, a biopsy, then sent home.  I am still spinning however. 

I have all the symptoms except weight loss that I can see.  I don't know, need the definitive results.  Would so appreciate a comment. I would like to ask them, and have info first before I call or go by the office.  Or do I just wait?

 

 

 

 

Sisters three's picture
Sisters three
Posts: 158
Joined: Nov 2012

 If your results aren't back yet they won't be able to help you. When you do get results start every visit by asking them to prepare copies for you to take home. Hopefully your first copy will say something easy breezy like, "All is well, go build your deck!"

 

Lisa

Cuddlymom's picture
Cuddlymom
Posts: 6
Joined: Apr 2014

I had an ultrasound, and then had to wait almost 1 week to get into the OB/GYN. Then they had me come back the next week for the biopsy, then another 10 days for the results. She said they normally have you back in 2 weeks, but she knew I'd be stressing, so she made it a week and a half. Now, I'm waiting for a referral to a surgeon out of town. There are no doctors where I live who they recommend for a complete hysterectomy including some lymph nodes. Praying I hear something tomorrow. I hate waiting and not knowing when things are going to happen.  

I was suppose to drive back to Florida with my son to see my husband as soon as school gets out, but I just don't know how that will work out. 

mmfintx's picture
mmfintx
Posts: 17
Joined: May 2014

I just had to look up 'complete hysterectomy'. You had the biopsy, and I wonder, how do you already know you need a complete hysterectomy and lymph notes removed?  I'm reading about the need for that if what they find warrants that, I guess by the initial biopsy post ultra sound. Then when the hysterectomy takes place there is a decision then on what sort of treatment is needed based on margins / sight I guess / and biopsy results.  The need to have a gyn / surgeon / onco combo. That makes sense!  I am in the DFW area, and have options there, don't know who, or how to get reccomendations.  Maybe they are assuming lymph node removal?  That makes sense. 

It sounds like you have some logistical issues too! Do you live in Florida? I don't know your circumstances, if you have a choice, go where you can get the best care and support. Your son will need care too, if he can't drive himself, then he's young I imagine. I lived in Florida, and have traveled often, if he is able to be escorted via the Airlines, that is a big deal, and kids do grow up so much faster than they have to sometime. Too, it is so true, when the cabin starts to lose pressure, First put the mask on yourself.  

Do what you need to do to take care. I wish you the best !

Mary

mmfintx's picture
mmfintx
Posts: 17
Joined: May 2014

Mo, 

So Very Happy for you!  And just found the shoes on Sears on sale 19 bucks. 

If you come back....please tell me how / what / where is Alkaline water...sounds good.

 

Best!!!!

 

Mary

Luv2paint
Posts: 5
Joined: May 2014

Mary,                                                                                                                                                                                                                                           Thank you for the info, guess what, I went to my Sears & bought 3 pairs, they actually had them this time.:) I have washed them in the washing machine also, they come out great.

The Alkaline water I buy is Eternal & I buy it at Ralphs. It used to come from New Zealand but is now obtained from springs in the US. It is naturally alkaline & cancer does not like an alkaline environment. not every store stocks it, unfortunately.

Mo.

 

 

 

 

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