Spots along spine CLL: Hi. I’m new here :). My... - CLL Support

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Spots along spine CLL

Efig
Efig

Hi. I’m new here :). My sister was diagnosed with CLL a year and a half ago at age 34. She hasn’t had any noticeable symptoms except some fatigue, but her wbc have increased in the last few months, currently at 28,000. A few days ago she woke up with what looks like small burns along her spine, in 3 spots (2 upper back and 1 lower). She had also mentioned she had a headache on and off. She went to our family doctor and he didn’t seemed concerned. He was convinced that it was a wound from something external. She is now waiting a few days to see if any new spots appear before she visits her oncologist for an opinion. So far, no new spots. Seems that’s the spots are scabbing and itchy now. Anyone experience anything like this? I tend to worry but am trying to keep it to myself because I don’t want to show her that I am panicked in any way. I keep associating the scabs and the headache to something related to the central nervous system, and I’m not sure if that’s going to the extreme.

Any advice would be wonderful.

Thank you 😊

21 Replies
oldestnewest

I don’t blain you worrying. That is concerning. Take your doctors advice on this one derm issues aren’t “usually” related to CLL not headaches. Have more blood work done and screen maybe for some other underlining causes. I too was diagnosed like your sister at at young age, 39. There’s not many of us out there. Mostly people are 55+

Efig
Efig
in reply to Philipoc

Thank you for your words. Helped me relax quite a bit. It is strange at such a young age. We are hopeful for her though. I hope you’re doing and feeling well.

Philipoc
Philipoc
in reply to Efig

No probs :)

It is worth noting that the shingles virus hides in the spine and the nerves. It can then spread out from the spine.

If it is shingles then VERY urgent treatment with drugs is important.

Worth testing for this as soon as possible.

Dick

Efig
Efig
in reply to Kwenda

Yes we thought about that but the family doc said it didn’t look like shingles. Thank you for noting. It is currently a mystery.

I was 35 when I had my first round of Shingles. They didn’t believe it was Shingles because I was so young. I went to the NY Skin and Cancer Clinic and they called several doctors and interns to take a look. I was also nursing my 4 month old baby and was very healthy. I would get it checked to be sure. Good luck. Sally

Mrsminton
Mrsminton
in reply to Efig

It does sound like Shingles--I had it just this past January. I'm surprised your family doc was so casual about saying it's not Shingles. It is well known in the medical community that the sooner you start the anti-viral meds for Shingles, the better it works (it diminishes the pain and also the duration). If you haven't seen an Internal Medicine doc (assuming your family doc is a Family Practitioner), I would suggest an appointment with an IM doc.

Hi Ef

My CLL is still a bit milder then your sister and after fatigue my skin is one of the bigger issues

So while they don’t make a direct connection to CLL in general I don’t heel well and am far more fragile and the skin issues seem to fall into that general this never happened before or lasted so long

Efig
Efig
in reply to Tommays56

Thank you for replying. I hope it’s nothing serious. And I hope you’re feeling good as well.

Did the spots blister before scabbing as it could be a mild case of shingles which is common in Cll.

It generally starts with a burning sensation and flu like symptoms and blisters and scabs after a brief time depending on the severity.

It might be and idea to mention this to her Dr again as you may need anti virals to help prevent it from worsening.

Stuart

I would definitely have your sister see her hematologist ASAP or get to an ER. Has she done anything that could have caused external wounds? If not, don't let her doctor dismiss this!!! Shingles can start without any obvious symptoms, but the scabbling and itchy are concerning. Better to be on an antiviral and be wrong than to ignore it and find out you shouldn't have. My doctor always prescribes an antiviral immediately if I have symptoms, even if she hasn't seen me yet. We figure things out later if I can't get right in.

Sounds line shingles to me, my husband came up with spots under his armpit that spread to his shoulder that looked like burns and was seen by 2 doctors before his Onacologist saw it and told him it was shingles. His got really bad and it took him to his knees literally. One thing with Shingles is the breakout stays on one side of the spine(you can have them anywhere but usually the breakout stays on one side of the body).

MsLockYourPosts
MsLockYourPostsVolunteer
in reply to Toejo

It's important for us to know that shingles can cross over and affect both sides of the body. Don't let anyone tell you that you don't have shingles because it never crosses the mid line!

pkguk2
pkguk2Administrator

Hi Efig, and sorry to hear about your sister. Most definitely seek an appointment with your sister's CLL consultant as the symptoms you describe could be shingles, which can cause real problems in immune compromised patients. The shingles virus lies dormant in the spine area until it is triggered, and it then travels along the nervous system. In severe cases it can cause nerve damage, although in your sister's case it does sound like a relatively mild case. However, please don't take any chances and try to get your sister on antiviral medication just in case. No point in taking chances. Hoping your sister recovers quickly.

Hi Efig,

I was diagnosed at age 39 also when I notice my lymph nodes in my neck were swollen. I would get many headaches, and also I would get low grade fevers at night and extreme night sweats. I did get treatment right away because in the weeks following my counts kept doubling.

After my 6 month treatment with FCR I was in complete remission. I just turned 50 last month and still cancer free.

I also have a mark on my back ( lower spine) that has been there for years, it gets flaky and itchy and sometimes even burns. I actually forget about most of the time but I probably should have a dermatologist look at it.

If you want to help your sister, don’t panick around her, listen to her fears when she talks to you about them but keep her spirit up by telling her all the good news you hear about CLL like : complete remissions ARE possible now, and go to the doctors with her to be her advocate, help her around the house like with cleaning because she is probably fatigued.

She is lucky to have a caring sister like you, I know my sisters were my rocks and I thank God for them!

Best of luck t you and your sister,

Cindy

Efig
Efig
in reply to Loulou46

This is such great advice!! Thank you for the hope! I do tend to feel panicked but I am currently living far away from her so although we speak several times a week, it is a little easier to keep the panic to myself. Getting a cleaning service for her house (since I can’t physically be there) is an excellent idea!

Hi, I was diagnosed with CLL aged 46. I also wonder whether it might be shingles. I had it last year and it presented as 8 spots on my spine about 5 inches up from my tail bone. Gave me bad nerve pain in my right leg, but this was treated quite effectively with amitriptyline. Good luck with everything 🙂👍

I doubt that it’s CLL. Check with oncologist If you are saying that burns mean water filled blisters then it’s shingles. And that is worse than the CLL. If the Dermotologist say it’s shingles her her started on acyclovir 800mg 5 Times a day until they are gone. If she gets them frequently take 1 tab 3 x a day to prevent.

I have had the CLL FOR 40 years don’t get in too big of a panic

MsLockYourPosts
MsLockYourPostsVolunteer
in reply to ThomasHarrell

Congratulations on 40 years! I don't think anyone is saying to panic, just to get checked. If this is shingles it's important to start treatment immediately to prevent permanent damage. My doctors would rather have me on an antiviral and be proven wrong than miss the diagnosis. Shingles doesn't always look or act like what you usually find if you research it.

Efig
Efig
in reply to ThomasHarrell

Congratulations!!!! I hope the same case will be for my sis! 😊

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