Blood clots and chemo questions

JanJan63

So I had my second Folfox treatment on Monday. I'm having the cold sensitivity worse than after the first treatment and they say it will likely get worse. I'm wondering how often this is irreversible? I've read that it can be and it's making life difficult and I'm scared it will continue.

Next question is about blood clots. I'm almost five months post surgery and having blood clots, they say probably from the chemo. After week one I had one in my calf and now as of two days ago I have one in my ankle and one feels like it's starting just below my knee at the back. Has anybody had an issue with blood clots and, if so, what did you do about it? They hurt and I don't want to get any more. I'm reasonably active and elevate my leg when I sit. I don't know what else to do to prevent it.

I'm so sick of the little extra surprises that come with all of this crap. My brother is now in the final stages of his cancer battle as things suddenly went south for him with his esophageal cancer and I need to see him but today I can't because of this. I'm feeling very emotional and like I need antidepressants or something. This has become so overwhelming. 

jen2012

Don't be afraid to ask for an

Don't be afraid to ask for an anti depressant.   Of course you are overwhelmed...it's a horrible situation.  My husband didn't want to take anything, but after his reoccurrence last year finally agreed to take Remeron.  He takes a low dose at night and it helps with sleep too.   

 

He developed blood clots clots after about 4 months of folfox and has been on lovenox shots since February 2013.  Kind of stinks but it's just one of the pleasures of cancer.   The cold sensitivity went away for him after about a week and completely when he stopped the oxaliplatin.  He has some neuropathy but not as much as when he was getting the oxi.

Blood clots are dangerous...I would tell the docs immediately if you think you have one.  Use your judgment and don't let them fluff you off.   my husband complained of symptoms of blood clots and the doc didn't think it was, until he couldnt breathe and could barely walk.  

so sorry about your brother, and your situation.   can you call or FaceTime with him?

herdizziness

Oxi

The first time I had the Oxiplatinum I couldn't drink cold things for 5 days, then it became 7 days, then about 9 days, the progression stopped after 9 days of not being able to drink cold things, so for 6 months, I dealt with it, until I was able to have surgery (they told me I would never be able to have surgery but thanks to the Oxi, Xeloda and the other one which I have now forgotten, it was over 4 years ago) I did.  The cold toes and fingers went away, took a month for thr hands to feel good again, and about six months for the feet After stopping the chemo.

I am on the Oxiplatinum again, and have been doing it for three months now,every single week for 4 weeks then a two week break then every week for 4 etc.  This time has been different, I get a glass of ice water and drink it during the infusion and keep my hands on the glass (actually plastic glass) keeping my hands cool.  I am able to drink cold water on day one and every day after.  The cold sensitivity still lasts in the hands, but not as severe as the first go around, I still can't hold the ice water without a couple of paper towels wrapped around it. Why this time it is different I don't know, is it because I'm drinking cold water and keeping my hands cool, or is it because it's just different this time.  Four years ago, after the infusion was started the cold sensitivity hit me right away, touching the handle of the toilet to flush hurt from the cold as well as the knobs on the sink and water to wash my hands.  This go around, I can touch all the knobs I want and not feel bad at all.  And I don't even care for water that is cold from the fridge, I put mine in the freezer until it ices up and then I can drink it quite happily, and this is from the day of Oxi and every day after.  Mind you for the first 4 or 5 days, I can't chug water down that cold, I can only take small sips otherwise it does bother me.

So it will get better, eventually... some people still have some sensitivity long after but many do not.  My first time was very severe sensitivity and I dreamed about cold water that I couldn't have, and yes it made me sad.  I actually had to microwave room temperature water because even that was too cold for me, so I do understand your suffering, and yes it sucks, but it doesn't last forever, it gave me a lot more years of life and now again is helping me stay here on earth a little while longer.

And there is nothing wrong in asking for help to deal with the issues you are having, cancer and it's treatments can be very depressing.  So check on anti-depressants and even a therapist, it won't hurt and it will probably help you deal with it.  If I hadn't found CSN and the many people that helped me deal with and understand the chemo's and there effects, I might have been very depressed.  I'm lucky I found this place.

Things will get better, as you learn to deal with the side affects (ask your onc if dose can be lowered a little bit) and the cancer.

It'll be okay.  Holding you in my heart.

Winter Marie

 

janderson1964

The cold sensitivity went

The cold sensitivity went away for me once I was finished with FOLFOX plus Avastin in July 2006 but I still have nueropathy in my feet after 8 years.

I have had 3 clots but not from FOLOFOX. I had 1 clot around a PICC line in  2007 when I was doing FOLFIRI and Avastin. They took the PICC out and gave me a port. I had another clot around the port line at the begining of 2008. Onec I was done with treatment they took the port out. Then in February 2012 after my second recurrence and back on FOLFIRI plus Vectibix I had a clot near my ankle. I havent had any clots since then even though I have been back in treatment for the past 8 months. Go figure.

JanJan63

janderson1964 said:

The cold sensitivity went

The cold sensitivity went away for me once I was finished with FOLFOX plus Avastin in July 2006 but I still have nueropathy in my feet after 8 years.

I have had 3 clots but not from FOLOFOX. I had 1 clot around a PICC line in  2007 when I was doing FOLFIRI and Avastin. They took the PICC out and gave me a port. I had another clot around the port line at the begining of 2008. Onec I was done with treatment they took the port out. Then in February 2012 after my second recurrence and back on FOLFIRI plus Vectibix I had a clot near my ankle. I havent had any clots since then even though I have been back in treatment for the past 8 months. Go figure.

Thanks you guys. I'm so

Thanks you guys. I'm so scared that the cold reaction will stay like it does for some people. I hate it so much. I just want a cold drink of something, not warm or hot.

It turned out that the blood clot was probably already there and may never go away. It's in a small vein so it's not dangerous but I'll likely have issues with it off and on for as long as I have it. If I bump my calf or a shoe or boot irritates it it'll likely swell up again. The whole vein from my knee to my ankle is affected. It's not thromosis so I don't have to worry and the chemo likely just made it happen sooner rather than caused it.

Trubrit

JanJan63 said:

Thanks you guys. I'm so

Thanks you guys. I'm so scared that the cold reaction will stay like it does for some people. I hate it so much. I just want a cold drink of something, not warm or hot.

It turned out that the blood clot was probably already there and may never go away. It's in a small vein so it's not dangerous but I'll likely have issues with it off and on for as long as I have it. If I bump my calf or a shoe or boot irritates it it'll likely swell up again. The whole vein from my knee to my ankle is affected. It's not thromosis so I don't have to worry and the chemo likely just made it happen sooner rather than caused it.

Same place

I have a lazy valve in my leg, threatening a clot.  It hasn't happened yet, and I try not to keep my leg still for long periods. I just spent 12 hours on a plane, so made sure I got up and about often. 

Im glad your clot is not too threatening. 

My cold sensitivity went away during chemo but the neuropathy in the feet is still bad over a year out from treatment. It's different for everyone. Try not to worry about what might happen and concentrate on what you are going through now.

Sue - Trubrit