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Always worrying!!

nickydog
Posts: 70
Joined: Nov 2010

Hi
My daughter (23) was treated for Hodgkin's Lymphoma with ABVD ending in March and 20 radiations treatments ending on August 19th. Everytime she gets an ache or pain my mind just goes wild and I think all those bad things. Just recently she has been complaining of pain in her sciatica area. She saw her dr and he has ordered a CT scan. He doesn't think it has anything to do with the lymphoma, but is a result of the long road trip we had (10 hrs). He is ordering the test as a precautionary thing. Has anyone out there ever experienced any pain like this? Also will there ever be a time when I won't worry about the hodgkin's coming back with every ache or pain she has?

allmost60's picture
allmost60
Posts: 3172
Joined: Jul 2010

Hi,
I imagine you will always worry to some degree with her cancer coming back. The longer your daughter goes with no recurrance, the less you will worry. You just need more time. On your other question..Yes..I have experienced pain in my knees, legs, neck, joints and muscles. My doctor says it "might" be caused from the chemo, or "possibly" from the Rituxan maint I am currently having. He doesn't ever say FORSURE what is causing it, because personally, I don't think he truely knows. All I know is I didn't have as much soreness or discomfort "before" chemo. You will know more after the scan results come back. Please share with us what you find out, and try not to worry...(I know...easier said than done)! Best wishes...Sue (FNHL-2-3A-6/10)

nickydog
Posts: 70
Joined: Nov 2010

I think I will always worry, but hopefully over time it will not be quite so bad. The pain that she is having is in the muscle area and it worries me. I cannot stop worrying that maybe the lymphoma is not gone even tho nothing showed up in that area on her PET scan she had prior to radiation. Also, her blood work on the day that her radiation was finished was perfect the dr said. I will let you know how things go as soon as we hear.

nickydog
Posts: 70
Joined: Nov 2010

The CT scan is done-praying for good news. Will post good news next week, please God.

Becca23
Posts: 7
Joined: Oct 2003

Hi nickydog,

I am a survivor of Hodgkin's Lymphoma...just like your daughter. I was also 23 years old when I was diagnosed in 2003 and I also had ABVD with 20 radiation treatments. My family and I also used to worry about every ache and pain right after treatment. It is completely natural. I was compelled to respond and try to ease your mind. I have been in remisson for almost 8 years now and have never had another issue (thank goodness!). It does get easier as time passes...I can promise you that. This support group helped me through it all and we are all here to help you and your daughter through it as well. If you ever need to talk or have questions, please feel free to message me at anytime.

Sending you hope, strength and blessings.

Becca

CountryGal7557
Posts: 165
Joined: Feb 2011

Becca, this is so awesome that you just happened to be checking at a time where someone else needed your first-hand experience and encouragement! You're a true blessing to Nickydog right now! Hugs! Janelle

nickydog
Posts: 70
Joined: Nov 2010

Thanks for the response. It is always very encouraging when we hear stories like yours!! Where was your hodgkin's? My daughter had a large mass in her chest. After the chemo there was a small spot on her chest that lit up in the PET scan and there was also a tiny spot in her neck. She is feeling really good now tho except for the pain in her sciatic area.

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I had an insufficiency fracture in my hip (but felt like my butt) due to weakening of the bones from radiation and menopause caused from chemo. Of course I had radiation in that area. It doesn't sound exactly the same, but mine was caused from every day motion. I didn't do anything to hurt myself.

Hope they figure it out soon.
Beth

Becca23
Posts: 7
Joined: Oct 2003

Janelle - You are right...I'm so happy that I logged on and am able to help someone in need. :) Hugs to you too!

nickydog - Your daughter and I have a lot in common. I also had a large mass (3 inches) in the center of my chest. My oncologist said that sometimes scar tissue will light up as well. I still have scar tissue in my chest from the entire experience. I am so sorry to hear of your daughter's pain. I can definitely understand your worry with everything you all have been through. I had a lot of joint and muscle pain after chemo that lasted for over a year. I think the treatment takes such hard a toll on the body, it takes awhile to build it back up. You and your daughter will be in my thoughts a prayers. I have a strong feeling that the CT scan will ease your mind and everything will be fine. I'm glad your doctor is being so thorough....it sounds like your daughter has a great oncologist. Let me know if you need to talk and definitely let us know how the CT scan comes out.

nickydog
Posts: 70
Joined: Nov 2010

Nothing showed up on the CT scan of her back. Thanking God every minute of the day!!

jimwins's picture
jimwins
Posts: 2064
Joined: Aug 2011

I'm so glad :).

allmost60's picture
allmost60
Posts: 3172
Joined: Jul 2010

I'm so happy nothing showed up. Now please try to stop worrying quite so much...I know, easier said than done! Be sure to keep us posted on your daughter.
Much love...Sue (FNHL-2-3A-6/10)

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Glad to hear that. John

Go_go_Gi_gi
Posts: 84
Joined: Aug 2011

Thanking the Lord for you also!! and Will keep you and your daughter in prayer. Susan

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Hi Nickydog!

Spring of 2010, I noticed a tightening in the area above where the buttocks meet. There was also a small area on my butt that was numb. I attributed these symptoms to the increase in exercising and walking routines. My doctor agreed with me too but she indicated that she just wanted to rule something out. The area that felt tight, was also the spot that sent pain down the backs of both of my legs. The disease that she was worried about was equines something. Sorry, I can't retrieve the entire name. If you google back and equines it should come up. This equines syndrome is a surgical emergency and cause irreversible harm if found too late.

A few days following this office visit, I had an MRI on my way to work. Less than two hours later, my doctor's office called and requested I get up there as soon as possible. You guessed it! DLBC NHL. And from the doctor's office I went straight to our university hospitals cancer unit where I stayed for the next three weeks. The surprise in the clouds silver lining was that one floor above me, down the hall from the peds cancer center, there's a Tim Hortons as well as a Cold Stone Creamery.

They found a mass of lymph tissue snugly around my lower lumbar and sacral spine. It was inoperable. Scans over the next few days showed hot areas in my chest and bone marrow, which staged me at IV. My cancers in remission. The mass remains as does the neuopathy and pain that originally came with it. I'm scheduled for a nerve block this week. I am very hopeful that this procedure will be a success so that I can increase my endurance and form and then finally get back to work!

Kellie

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