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Reoccurence

els19
Posts: 90
Joined: Jun 2014

I happily posted last December that I was five years cancer free following treatment and then out of the blue the cancer is back. UPSC is certainly sneaky. I was having severe lower abdominal pain last week that I thought might be diverticulitis but no the only thing they found on the CT scan were enlarged pelvic lymph nodes. A follow up CA125 showed 605. Mine was never that high previously. My oncologist wants me to start back on chemo next  week. He doesn't even want to wait for a port to be put in but has me scheduled for one. I did respond to chemo well the first time which was the normal Carbo/taxol. So now I'm scrambling to get ready for all this. Ten  days ago my life was normal and now I'm just reeling. I do still have neuropatby in my feet from last time. I'd like to avoid that and have ordered the booties and mitts to try icing. If any of you have tried this can you share some tips and guidance? Also I had a horrible itchy rash when I loss my hair. Does anyone have any ideas how to avoid that happening again? It seems like a lot has changed in the last six years but a lot is the same. Did anyone have success not having a port? I always had it before and kept it in for three years after treatment fearing a reoccurrence. Any advise would be greatly appreciated. I'm trying to stay positive and one of the hardest things is due to Covid my husband will not be allowed to be with me during treatment. It was such a comfort to have him with me last time. I did have problems the first time I was infused and had to be infused slowly which they said the will do again. I know many have been through reoccurrences and I'm lucky I had such a long break. Six years ago I had just finished chemo and was getting ready for radiation. So, I was definitely blessed. It's funny all the times I worried over slight CA125 elevations to have this come back without any symptoms. I was fine last December was due in November for my first appointment with the nurse practitioner. Since April of 2014 I've had regular 6 month exams and CA125 tests with my oncologist. This was my longest break not thinking about cancer. But I'm lucky I did have a break.

Maxster
Posts: 62
Joined: Apr 2020

I am very sorry to learn of your recurrence.  UPSC is such a rotten cancer!  I finished my chemo in February and found the icing to help tho I do have neuropathy in my feet.  However, I only iced my hands at first.  Some others have suggested starting the icing earlier --hour or two before the infusion.  I know I only started 30 minutes before and just for one chemo.  I'd suggest doing it throughout.  Head itching can be caused by dryness.  I followed a suggestion to put conditioner on my scalp even tho I had no hair.  I found this to really help with itiness and rash.  I wish you the best in this round of treatment.  Will you have radiation? I know some of the women did have radiation again after a recurrence.  Since it appears to have stayed in the pelvis, maybe this is something to ask about.  Some women have posted they had all their infusions through their arm.  I had one that way because of the hurry to start the chemo and it was fine.  I really didn't want a port but my oncologist felt the nurses did better with them.  I wish you the best on this second round.  Keep us posted, please.

els19
Posts: 90
Joined: Jun 2014

The doctor said no to radiation. He is hopeful chemo will work well for me since it did last time. I was NED after the first chemo last time and it lasted for six years. Having a port last time and just an IV today made me realize how much nicer a port is for chemo. Thanks for the the tips. 

BluebirdOne
Posts: 370
Joined: Jul 2018

I had four chemo, by design, and no port was inserted I assume because of the low number. However, I had chemo needles in my hands, which temporarily gave me hard nodules and they had a hard time getting the fourth chemo needle in. Now I have trigger fingers, both hands, middle finger which they think might be due to the many IV sticks (also had them for surgery, CT scans for contrast) which are quite painful. I have also had surgeries on each hand to correct trigger finger due to arthritis, years ago, so I am prone to this. My first chemo I did not know about icing, so I immediately developed neuropathy in both hands and feet. I iced both hands and feet after that and it did not get worse and has mostly resolved. I think icing hours before is overkill, as I iced my feet due to plantar fascitis and they only recommended 15 minutes per session., and my feet got plenty cold during that time. (icewater bath) My head was hot during hair loss but not itchy, thankfully. My husband never stayed during my chemo, except for a short time for the first. I told him to go back to the hotel as I mostly slept during my 5 hour treatments. He would call me to make sure I was ok. He would have been ok staying, but I felt worse for him than me during infusion. We also had individual rooms so it was quiet and peaceful. Good luck to you!

xxoo

Denise 

Molly110
Posts: 183
Joined: Oct 2019

Els 19, I am so sorry that you have to deal with this again.

I finished chemo for UPSC in January. I used the mitts and booties -- the same mitts that were in the prominent study -- but I didn't start until after the first chemo and have quite a bit of neuropathy in my feet. My center will help if women choose to ice,  but they don't provide it, and I didn't know about it until I already had significant neuropathy in my hands from the first cycle. If I had it to do all over again, I wouldn't have used the mitts. I'd have used small bags of ice on my hands and feet. I think it's hard to get the elasto gel mitts as cold as they need to be using a regular freezer and to keep more than a dozen mitts cold enough in ice chests so that you have cold ones every 20 minutes to replace the ones on your hands. There is a physician who posts here at times who used icing (as opposed to the mitts) and perhaps she will see your post and describe what she did, which really worked for her. It sounds like you already know that you need to start before your chemo is infused and continue after the infusion ends. I agree with Maxster that you need to stay iced before and after your whole infusion.

I did not have a port for the first 3 cycles because I didn't want another procedure. For me, that was a big mistake. I have small veins, and it was an ordeal for them to draw blood for the tests, let alone find veins that could stand up to the hours of taxol infusion (like yours, mine had to be slower due to a reaction). When even my wonderfully skilled chemo nurse had trouble finding a vein and I developed a flebitis (sp?) I decided to get a port, and blood draws and infusions became smooth, painless, and easy.  I also had much more ease of movement during the infusions when the line entered through the port rather than my arm. I kicked myself for not getting one at the start. If your veins are good, you could try it without the port and see how it goes. It must be so frustrating to have kept it for so long and now have to decide whether to get one again.

I had no problems at all with my scalp except some slight soreness for a few hours about 2.5 weeks after each chemo cycle when the stubble that started to grow between cycles "died" again. I used something called Argan oil on my scalp throughout, and that may be why I had no itchiness or dryness although I wore a wig all day every day at work. If you decide to try Argan oil, Foxbrim Naturals is a good source of pure oil. I got mine directly from them online for the first bottle, which lasted all 5 months of chemo, and now I get that brand through Amazon for convenience. (I continue to use it to help my hair.) As it happens. Argan oil is used in a lot of hair products -- I'd never heard of it before it was recommended to me -- so you want to be sure that you get the pure oil and not Argan oil as part of some hair treatment, as the latter is likely to contain lots of other stuff that may irritate your scalp instead of soothe it. 

UPSC just stinks. I'm glad your body had 5 years to recover before you have to deal with a recurrence. It sounds like you are geared up and in a good frame of mind to do it again. I wish your husband could be with you, but it may help to know that I had no one with me for the last three, and that worked fine. I ended up sleeping through the infusions, waking only to have the mitts/booties changed, so my friend who came with me endured 5 hours of boredom while I slept. :) I had to beg him not to come for the last cycles. Of course, I'd have wanted a husband there if I'd had one, so I get that, but my guess is that the staff are realiy sensitive right now about what it's like for someone who wants a partner there not to be able to have him.

I have become a big adherent of acupuncture to deal with chemo and its aftereffects. Although it was recommended to me by my gyn/onc and nurse practitioner when I developed early neuropathy, my internist told me later that she thinks everyone undegoing chemo for any reason should be in acupunture throughout, but she is from India and trained in a more integrative medicine approach. Most insurance companies don't cover it, nor does Medicare (except for low back pain), so it isn't an option for everyone. 

Warmest best wishes,

Molly

els19
Posts: 90
Joined: Jun 2014

Thanks for all of your suggestions. I really appreciate it. I've only known for less than a week that the cancer has reoccurred and it's only been two days that I've known that I'll start chemo in a few days. So, I'm trying to find information fast. I remember hearing about ice therapy a few years ago but I don't see a lot of information on line. My cancer center does not provide equipment for it but I was told the nurses will help and provide ice packs. I let you know how it all works. 

cmb's picture
cmb
Posts: 615
Joined: Jan 2018

I'm sorry to read about your recurrence. I hope the icing hejps prevent your neuropathy from getting any worse.

I didn't have skin irritations on my head during treatment, but other women have reported this. This thread talks about some solutions that others have used:

https://csn.cancer.org/node/316593

els19
Posts: 90
Joined: Jun 2014

Thank you! It was very informative and if it happens this time I'll know what to do. I also was dismissed by the cancer nurse. Mine went away eventually but it was miserable at the time. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2855
Joined: Mar 2013

els, I am sorry to hear this.  I think "reeling" is a good way to describe what you are going through, and here is a link to a thread where several of us discussed not having a port:

https://csn.cancer.org/node/321986

Prayers for you and all the warriors.

Tamlen's picture
Tamlen
Posts: 294
Joined: Jan 2018

Els, I had a terrible itchy rash on my scalp after I lost my hair. It was truly awful -- itchy and oozing, and I couldn't sleep. My original oncology center poo-poo'ed it, telling me I needed to "buck up." In desperation I called a dermatologist and begged for an immediate appointment. He walked in, took one look at me, and told me I had foliculitis that had turned into a staph infection. He gave me a topical antibiotic and told me to put it on, wrap my head in cellophane at bedtime, and leave it 'til morning. The misery was over in a few days -- and I switched cancer centers after that (the failure to recognize foliculitis, which is not uncommon during chemo, was just one of many problems they had). My new center told me they routinely give patients lotions to manage foliculitis, so I encourage you to talk to your center about this ahead of time.

I insisted on a port, even when told it wasn't "necessary" (yes, by that same cancer center I later left) and am very happy to have had it. It saved the veins in my arms and hands and took one hassle out of chemo. I liked not having needles in my arm/hand when I wanted to walk around and wear the ice mitts (I responded to you about those on a different thread).

Take good care of yourself.

Tamlen

els19
Posts: 90
Joined: Jun 2014

Thank you! I will ask about that and possibly preventing the problem. I feel very blessed to have had five years without cancer and I'm not happy it's back. But my thought is to try to make this time go better than the original treatment and  prevent any problems are be ready to nip them in the bud right away. Everyone on here has been so helpful!

Molly110
Posts: 183
Joined: Oct 2019

Oh, no, Tamlen! What a horrible experience. I recently had that on my arms -- something that came out of nowhere -- and I can't imagine having it on my head and being told to "buck up." I can't imagine being told to buck up in response to any side effect. It makes me steaming mad that someone was treated that way during chemo by the very people who should have known better. I'm glad you found another, better place.

Kaleena's picture
Kaleena
Posts: 2053
Joined: Nov 2009

Els,

Sending you hugs.

Kathy

els19
Posts: 90
Joined: Jun 2014

You are certainly an inspiration! 

Quilter_1's picture
Quilter_1
Posts: 106
Joined: Mar 2019

Well this just sucks.  I wish you an easy treatment time and a speedy and successful recovery.

els19
Posts: 90
Joined: Jun 2014

Things are going well. My Ca 125 went down 40% with the first chemo. My doctor really thinks that since I went so long NED that I will do well again with chemo and again have a nice reprieve after I finish. He's talking years but is doing genomic testing to be ready for immunotherapy if needed. We all know that UPSC is a sneaky cancer. But I'm feeling very optimisti!

cmb's picture
cmb
Posts: 615
Joined: Jan 2018

Good news about the CA-125 drop. It's also good to hear that your doctor is having genomic testing done, just in case it's needed in the future. 

zsazsa1
Posts: 551
Joined: Oct 2018

Els, that is great!  Hopefully you'll have a complete response.  I have heard that if it's been a few years between chemo rounds, that they expect that the cancer will be susceptible again to the same chemo.  

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

Wishing you the very best as you continue.  So thankful the chemo is working! 

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