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Hi girls ;)

Flufff's picture
Flufff
Posts: 68
Joined: Apr 2019

 

It’s been a while since my last post. To be honest, I’ve been miserable.... Actually like I’ve never been before, in this crap journey. 

 

So about 2 months ago, I noticed that my left leg was thicker than the other. About 3 inches. At that point, that was all. Only the swelling. But oh my gosh, that changed. I’m in total agony. :( I have been dx with lymphedema in left thigh and pelvis. I can’t walk. Just taking a bath is draining game completely. Yesterday I actually cried due to pain. It’s horrible. And corona have been a obstacle in terms of getting this treated. This Tuesday I went to my first appt with a PT and she confirmed that I have lymphedema, took measurements for stockings and she referred me to treatment. So now I’m waiting for that. 

 

The last 1-1,5 months, I’ve spend about 99% of my time on my couch, with my leg elevated. I haven’t been outside for a walk since. I’m only outside when I absolutely have to. The hospital gave me morphine but that made me through up. 

 

As you may remember, I have gastritis as well. Me and hubby got a bug in the stomach. He only had some diarrhea. Me??? Oh dear... I was sick for 2 weeks. Hardly ate something... lost so much muscles. I’m as weak as I’ve ever been. 

 

BUT.. Its going in the right direction now. I’ve gotten some meal replacement stuff from the hospital and that made all the difference. It was so horrible. I actually started thinking if this was worth it. Living. I was a mess....

 

And on top of all this? My chemo isn’t working. CA125 is rising even when. On chemo (topotecan) And this chemo has been absolutely horrendous. It’s really hard on my stomach. And the thought that I’ve endured hell, and it’s not working - that sucks....

 

I was supposed to have another series. One series is 3 x weekly chemo and one week off. But me and my onc decided to skip the last one and move the scan up, which is next week. I’m expecting progression.... So will probably have a chemo break for some months and then hopefully start something new. Something that WORKS thank you very much.. 🙏🏼

 

So that’s why I’ve been so quiet ❤️

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

Oh, Fluff.  That sounds like challenge on every side.  So proud of you for working the problems and not giving up.  I am very hopeful that they'll be able to solve some of this for you!  We are here for you.  I have been away from the group for almost a month due to computer issues, and am glad to be back.  I'm praying for you right now.

Flufff's picture
Flufff
Posts: 68
Joined: Apr 2019

For the prayers ❤️❤️ Have a fantastic Sunday 🤗

cmb's picture
cmb
Posts: 646
Joined: Jan 2018

Fluff,

I'm very sorry to read that you've been so debilitated recently. I know how active you've been in the past and I'm sure this enforced period of inactivity is very troublesome for your mental as well as physical health. If your scan indicates that topotecan hasn't been effective for you, I hope that another chemo drug will produce better results.

And I've mentioned this in other posts, but my mother achieved remission for her advanced cervical cancer after several recurrences and years of different chemo drugs and surgeries when her new oncologist tried what was then a newly approved chemo drug (this was back in mid 1980s.) When she died some years later (of other causes) she was still in remission. So a different drug can work when others haven't.

I have lymphedema in my legs, with the left leg worse than the right. I haven't found it painful (so far) but I've stayed motivated to use the compression stockings every day because they make my legs feel better. I also use a leg wrap at night on the left leg.

Sometimes I supplement the night wrap with an additional bandage around my foot and ankle, which are common swelling points for me. And I'll often add a bandage on top of the left thigh stocking since the upper leg area seems to swell more than the lower leg.

I hope the compression stockings help relieve the pain and allow you to get back to some level of activity. I'm not up to doing the heavy-duty cardio exercise classes that I took in the past, but I do take yoga and stretching classes that aren't impeded by the stockings.

Come back and let us know how the scan went and how the lymphedema treatment is going. I'm hoping you have better days soon.

Flufff's picture
Flufff
Posts: 68
Joined: Apr 2019

Thank you CMB :)

I really hope that the pain will subside, once I start treatment and get the stockings. My pain level is quite high, but this is just insane. And it's true. I've always been very active and now I find myself as weak as ever. Just climbing the stairs at home, makes me out of breath. My tendind sre completely tight. Especially in my hip and stomach from laying in this position for more than a month. But next week I will begin rehabilitation at a physiotherapist. And soon I will start treatment of the lymphedema. So I just have to wait a little bit longer. I got some crutches so that I can move around a bit. Went outside for a small walk yesterday. First one in probably 1,5 months. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1748
Joined: Jun 2015

Fluff, So glad to hear from you and I wish it was under better circumstances! I can't offer any personal experience to you. As ususal, CMB has provided a wealth of information that I hope will help you. Please come back and let us know how you are doing and what the next steps are for you. Sending you loads of support and caring thoughts....

Love and Hugs,

Cindi

Flufff's picture
Flufff
Posts: 68
Joined: Apr 2019

Thank you Cindi <3

barnyardgal
Posts: 273
Joined: Oct 2017

I'm sorry you're dealing with all those issues. Hope your drs find just the right drug cocktail to kick cancer out of the park. 

When I found out I was highly allergic to taxol and the drs were deciding on a different regime, I was scared and depressed. My wonderful infusion nurse assured me there were lots of drugs they could try. Hope they quickly find right one for you!

Flufff's picture
Flufff
Posts: 68
Joined: Apr 2019

I've been through 3 different chemo combinations now. Let's hope that number four is THE one ;)

Forherself's picture
Forherself
Posts: 503
Joined: Jan 2019

It's hard to hear you having such a difficult time.  I remember someone saying there are physiotherapists who specialize in lymphedema.  They were very effective with relieving some of the symptoms.  You are in my prayers every night.  

Flufff's picture
Flufff
Posts: 68
Joined: Apr 2019

Thank you for the prayers <3

I hope that that PF can do wonders too. Waiting to get my appt :)

zsazsa1
Posts: 553
Joined: Oct 2018

Fluff, I don't come on that often right now, but I did tonight and glad I did.  I'm sorry for what you are going through.  There is a machine that may help.  My girlfriend who had surgery for cervical cancer had all the lymph nodes removed, then developed severe lymphedema.  She has a machine that really helps her.  It's like the compression machine they use on hospitalized patients to keep them from getting blood clots in the legs, but it is for both legs all the way up the thighs.  It looks pretty weird, but she straps it on and it squeezes the lymph back up into her torso.  It helps.  Call the physical therapist tomorrow morning and ask about it.

dgrdalton's picture
dgrdalton
Posts: 151
Joined: Jun 2017

Fluff, it is good to see you back on here. Hoping a new chemo will help. As far as the lymphedema, I can relate. By the time I got an appointment with a physical therapist that was certified in lymphedema, my right leg and foot were so swollen and hard I was using a can or walker when I did need to get out. It has been a lengthy process, but I am able to walk a little outside with a cane. I do miss my walks as they were so helpful in keeping my spirit up.

First I had a knee high compression sock until my wrap around garments with Velcro came in. They really helped to get the leg to begin shrinking. Then I got the legs that I zipped on and a pump that mimics the muscle action that would naturally get the lymph fluid to flow upwards from foot to top of leg (they have one that fits like pants and goes to the waist.) I use the pump fr an hour in the morning and an hour in the evening. I now have a thigh high compression stocking that gives me more freedom of movement. I also massage my lymph nodes and exercise my legs at least 2x a day. So, Fluff, there is light at the end of the tunnel for the lymphedema. 
Hugs & prayers! Let us know the scan results.

Donna D

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2885
Joined: Mar 2013

Dear Fluff, I apologize for not posting sooner.  I am so sorry to hear about all the issues, and while I seriously hope they can find a treatment, my heart breaks to hear the amount of pain you are in.  Unfortunately, I am not sure how many of us are really told about possible lymphedema and just find it "pop-up" rather than be on the look out for it.  (I know I didn't until I started to question swelling!) 

Donna, it is so good to hear from you as well and thank you for sharing how you have been treating your lymphedema.  

Hugs my dear friends. 

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