Post Chemo Effects: Hi. Can somebody out there... - CLL Support

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Post Chemo Effects

jaypax profile image
32 Replies

Hi.

Can somebody out there give me some help?

I finished my chemo treatment - Bendamustine & Rituximab - in February and I'm delighted that it was successful although my white cell count is still low. But the problem I have is that for the last couple of months I have, especially in the evenings, what I call a 'prickly' feeling on/in my skin. It's the sort of skin sensitivity one gets when building up to a high temperature, but my temp is normal.

I don't know if that makes sense but it's the best way I can describe it. My haematologist is a bit at a loss to explain it and thinks it may be a long term effect of the treatment. A night's sleep helps and I am more or less clear of it in the morning.

Anybody experienced this? I'd be grateful to have your thoughts.

Onwards & upwards!

Jeff

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32 Replies
jangreen profile image
jangreen

Hi I have chemotherapy induced pain in my feet. The nerve endings have been damaged. Although they cannot be repaired the pills I have been given work very well. Hopefully in your situation this may be just some nerves being over active and they may need some time to settle down.Good luck

jaypax profile image
jaypax in reply to jangreen

Thanks for your response. Reading what you say about pain in your feet makes me wonder if my odd pains in joints and muscles is down to the chemo as well.Hopefully you are right and it will settle down. Good luck to you too.

Cllcanada profile image
CllcanadaTop Poster CURE Hero

Bendamustine would be totally cleared from your body by now, but Rituxan hangs around for 6 months or so...

Did you experience peripheral neuropathy, numbness, tingling, pain etc in the hands, arms, legs and feet... during treatment? Might be tied to that... certainly in my case I had 6 months of various nerve issues...

Hopefully it is just a passing situation and will resolve soon.

chris

jaypax profile image
jaypax in reply to Cllcanada

Thanks for replying so quickly.

No I can't say I had any peripheral neuropathy or the like during treatment. But I had 3 rounds of B+R followed each time by a neutropaenic fever & hospitalisation. Then in Feb I had Ritux only and I am now on monthly checkups.

By the responses I've had it seems that nerve damage is not unusual during or after chemo. Interesting!

Regards

Jeff

Justasheet1 profile image
Justasheet1

Jeff,

There was much irony here. My name is Jeff also. I too finished bendamustine and Rituxin in February.

I have had a prickly sensitivity in my chest and or abdomen a few months before treatment and still now.

Tylenol will relieve this but I don't like taking it often. I'm fine in the morning and sensitive by noon.

I'm a 51 y/o male. 11q del unmutated fellow.

I always assumed enlarged lymph nodes caused this sensation and my doctors have never offered an explanation to me.

Yours is the first post I've seen on this. Did you only experience this post chemo?

Jeff

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to Justasheet1

Bendamustine is a nitrogen mustard gas chemical derived from a blisted agent, chemical weapon used in WW1, by the East Germans in the early 1960's. It is the same family as chlorambucil and cyclophosphomide, but has a purine analog...'ring' added... that resembles fludarabine... so it is a bit like FC...

Might explain skin conditions...don't know... pure speculation...

en.m.wikipedia.org/wiki/Mus...

en.m.wikipedia.org/wiki/Ben...

chemocare.com/chemotherapy/...

jaypax profile image
jaypax in reply to Cllcanada

Thanks for the references. Interesting reading! But you are right it may explain my symptoms. Just hope that it is a short term problem.

jaypax profile image
jaypax in reply to Justasheet1

Hi Jeff!

Indeed an irony! And our stories are so similar. The sensitivity is around the chest & abdomen and to a lesser degree in the arms. Like you I try to keep the pill popping to a minimum but most days take a paracetomol or ibubrufen. That helps the sensitivity but helps the joints also. At 74 yrs the old aches and pains get more & more. But we will keep on keeping on!

Best wishes

Jeff

There is a condition chemo induced peripheral neuropathy (CIPN). It sounds as if you may have been slightly affected by this. Hopefully as time passes it may reduce and eventually disappear.

Best wishes

Bubnjay

jaypax profile image
jaypax

Thanks, Bubnjay. It feels like a mild neuropathy. I'll mention CIPN to my doctor. Hopefully it will disappear soon.

Best wishes Jeff

PhilC profile image
PhilC

There is a theory that the condition & chemo effects hydration and as a consequence your histamine levels are elevated causing the itching / something crawling on your hair sensations. I had both but on increasing my water intake to three pints a day the sensations have virtually gone unless I forget to drink the required quantity.

jaypax profile image
jaypax in reply to PhilC

Thanks for your response. Interesting! It will be well worth trying.

I will certainly increase water intake and see if that helps.

Jeff

PhilC profile image
PhilC in reply to jaypax

Have a look at this watercure.com/pdf/neuro_his...

certainly helped me. I started at 4 pints per day but now only have three to four half pint glasses. I find two glasses when I get up stopped the intial itch then one at lunch and one or two at bed time.

ThreeWs profile image
ThreeWs in reply to PhilC

Hi PhilC,

I found your referenced abstract interesting. Both prior to first TX with FR, during TX and for the last 46 months on Ibrutinib I have experienced high BUN (Blood Urea Nitrogen) which is a sign of dehydration. My Oncologists and Nephrologist have not explained this given my adherence to drinking plenty of water and regretfully abstaining from alcohol. If I drank any more water I would need gills and a set of fins.

I would be curious to know if you had persistently high BUN values and if you noticed any correlation between the itch severity and hydration as measured by BUN. High BUN may refer to a metabolic defect irrespective of quantity of water drunk. I have experienced itching but pretty much confined to dry cold winter weather for which moisturizing skin lotion is a fix.

WWW

Justasheet1 profile image
Justasheet1 in reply to ThreeWs

Wayne,

My BUN values have been normal both before and after chemo.

My sensitivity lead up to tx and persists now.

I also have a stiff neck. I've always felt this was associated to my CLL and swollen nodes too.

Jeff

katier profile image
katier

I've noticed several 'skin related' differences since finishing chemo in December...I have 'tingling' in my hands and the lower part of my arms; My skin is VERY 'dry' (which it never was before)....nails more or less stopped growing, they've just stayed the same length as during chemo...overall, I have almost an 'arthritic' feeling in hands and arms, shoulders , hips and knees....maybe I'm just 'getting old' but just months before I started chemo, I was still 'dancing up a storm'...now I can barely 'get up and down' because of stiffness....I think there's definitely a connection...you didn't mention 'exhaustion'....do you have periods of tiredness during the day where you just suddenly need a NAP?!

wroxham-gb profile image
wroxham-gb

wayne, it seems that everyone who answered your post gave you good advice. This is just a little add on and food for thought. Allergies. It could be that something you've used for quite a while does not suit you now. Lots of products get changed without our knowledge these days. Something worth thinking about. Just be aware I am no expert.

I have had to change deodorant after many years.

Hope you get the issue resolved quickly.

Sue :-)

PaulaS profile image
PaulaSVolunteer

I just read Sue's comment and completely agree about allergies. I started to get itchy patches a few years ago, that turned into full-blown oozy eczema. I'd never had eczema before. When I stopped using soap on those areas, it gradually healed and hasn't come back. :-)

Once I did try using soap again - a very "simple" soap, and the itching came back...

I've never had chemo so other people's problems might be completely different, but I thought I'd mention my experience. It had such a simple solution and might just help someone else.

Happy scratching, everyone (yes I know we shouldn't scratch, but it's hard not to!)

Paula :-)

Justasheet1 profile image
Justasheet1 in reply to PaulaS

So what was your "simple solution"?

Jeff

PaulaS profile image
PaulaSVolunteer in reply to Justasheet1

It was just stopping using soap on the itchy areas.

Justasheet1 profile image
Justasheet1 in reply to PaulaS

Please forgive my ignorance. Then what are you using to bathe . Body wash?

PaulaS profile image
PaulaSVolunteer in reply to Justasheet1

Just water on the sensitive places. Simple soap in a few other areas but always well rinsed afterwards. Very diluted shampoo on head. Works for me.

PaulaS profile image
PaulaSVolunteer in reply to Justasheet1

But I knew someone whose itching turned out to be undiagnosed scabies... That needs very specific medical ointment to get rid of it.

Justasheet1 profile image
Justasheet1

Thanks Paula.

Janetfld profile image
Janetfld

Jeff,

I know you have had many replies and I have read them all. I have just finished 8 months of treatment with Bendamustine & Rituximab. I am what some doctors consider a highly treated patient. This was my 4th time to receive chemo. This is my second time to use this combination of drugs. I can tell you I have experienced this and the futher out I got from treatment end the problem got worse. In addition, I started to get red dots that itched and thought I had a skin disease. Many visits to the deter apologist. Also mesquoite bites became very swollen and painful. Research showed me this is a side affect of these two drugs. Here is what I found that really helped. Do not take hot showers or baths. Take mild temperature baths. Use Aveno no itch soap followed by Aveno no itch lotion. Take one over the counter 10 mg antihistamine a day. This will take a while to build up in your system but keep it up as it will help. When the itching becomes too bad to tolerate use your prescription cream from the dertmatologist. My doctor gave me Clobetasol Propionate Ointment USP .05%. Stay cool and try not to get hot, as this will bring on the itching. Ice rubbed on your skin will also help you scratch less. Now for the good news, this finally went away when I was 20 months from chemo end. I hope your time frame is shorter.

Justasheet1 profile image
Justasheet1 in reply to Janetfld

Which antihistamine did you use?

jaypax profile image
jaypax in reply to Janetfld

Hi

Thank you for your advice. It has been very useful. Fortunately we do not have a mosquito problem where I live but I will bear it in mind. The prickly skin feeling is at last reducing and hopefully will not trouble me after the next few weeks.

You have been" through the mill" yourself. I felt so poorly on 6 months of B+R, I can imagine what you have been through. I wish you a long and trouble free outcome.

Best wishes

Jeff

Janetfld profile image
Janetfld

I am using a Walmart simply right brand. It is a 10mg antihistamine tablet taken once a day. It is called Loratadine. It does not make me sleepy or hyper like the Benadryl does. Of course you do realize by now the big bag of benadryl you got before you got the R&B was to keep all that itching under control. Good luck.

Justasheet1 profile image
Justasheet1 in reply to Janetfld

Thank you for taking time for me. I will take your advice and see what happens. 😀

Jeff

Justasheet1 profile image
Justasheet1 in reply to Janetfld

Janet,

I'm using generic Zyrtec for my itching now. Tepid showers and Aveno body wash.

It's working pretty well so far. Thanks for the advice 😀.

Jeff

Janetfld profile image
Janetfld in reply to Justasheet1

Jeff,

Glad to be of help. Also, I think I forgot to mention to stay out of the sun if possible, because it will trigger the itching. I hope you get a long remission out of this treatment. Someday they are going to come up with a cure for this, so until then, keep fighting!

Janetfld profile image
Janetfld

Jeff, keep my email address handy. If you experience mesquoite bites that are severe, let me know. I have learned a trick or two to help minimize the reaction. I did break down and bought a mesquoite suit that covers me from head to toe because they got so bad. But then again, this will go away as time passes. At least I know what to do this time so I am armed and ready.

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