High dose methotrexate

My HD-mtx is next week as my white blood count unexpectedly went down between Tuesday and Thursday. Will keep you posted!

How are you? 

The side effects from the last lot have pretty much passed but I'm starting to get anxious about the next round.

I understand that! 

You got through the 1st one so it should be the same events a second time. How many rounds do you have to do?

This will be the last one, but my reaction to the second round of intrathecal was worse than my reaction to the first.  Wish I could just sleep through it, to be honest.

Hi Lolie, I hope you are good. Did you intend to write "intrathecal"? I remember this one where they insert the low dose Mx into your spinal fluid. It was rather ghastly but I loved it being over. One time they could not find the right spot and I really felt for the doctor. I had a trick to over coming this - a can of cola and a lovely chocolate muffin filled with cream and cherry sauce. My gosh, I still remember the taste!

Yes.

I was meant to have 4 doses of intrathecal methotrexate but I had a severe reaction - febrile neutropenia, hand-foot syndrome, DVT, and haemoglobin dropping low enough that I needed a blood transfusion - after the second dose so it was discontinued.  I spent 5 days in hospital to get that reaction under control and then had to inject myself with anticoagulants for the next 4 weeks.

At one point they weren't even going to attempt the high dose methotrexate because of the previous reaction, but it's pretty much the only option for preventing the development of CNS involvement so it became a matter of weighing up the risks.

Gosh Lolie, you have been through so much!

You have come through it and I hope that what you have next is only a small part compared to the rest. 

I know set backs can really hamper the mental preparations. Have you watched this  video by Martin Indibitzen (https://youtu.be/M5QBH3wDrQY). I hope to distract myself greatly when I go in. 

Do you ever think of these chemo sessions like a scary roller coaster ride where your close relative needs you on the ride and you know you will hate it but they need you? Then afterwards its still frightening and you were dizzy but there is a sense of " I did it". I feel that way about the RCHOP. I looked away when they put the drugs in and I chatted to the nurses as much as possible because my imagination ran wild when I thought about it. 

Am going in tomorrow and will update you when I get back. 

Good luck tomorrow @Uhtred.  I'm sure it will go smoothly for you. 

Hi Uhtred

Hope everything went well for you.

Had my second lot of high dose methotrexate today.  Now we just deal with the side effects and wait for my MTX levels to drop.

Hi Lolie, 

It did go well, thank you for asking. Here is a summary of events:

• I went in on Thursday and started the hydration process via my PICC line. 
• At 9pm, the tests on my urine indicated that I was suitably hydrated and they started by HDMx for 3 hours while still giving me fluids. 
• At 9pm on Friday they carried out organ rescue by giving me a drug called Folinic acid, which was given every 3 hours for 24 hours (I think)
• On Saturday night they took a blood sample for testing
• On Sunday they informed me that my blood levels were suitably low enough for me to leave where 0.1 and above I would have had to stay my level was 0.09. 

Side effects and medication

• On the Tuesday before the nurse noticed a discolouration of my tongue which may be thrush. The doctor was happy that it was not but prescribed me Chlorohexadine mouth wash. I had to use this 4 times a day and am still using it now
• When I got to hospital they also prescribed my Nystatin, which I had to use 4 times a day. Therefore I created a time table and an alarm system so that I didn't miss it. the doctor said I can stop taking this drug after wednesday this week. 
• mucositis - I have not yet experienced this. The doctor said that the effects of the chemo will increase upto to day eight, which is on Friday this week (it is now Tuesday) and my white blood cell count should also be at its lowest. 
• Flush - my body felt incredibly hot last night so it was hard to sleep.
• Stools - I accidently pooed myself last night due to the stool  being gooey and smelly. I also suffered from stomach pains last night. The blood test from today indicated that there was no infection in my intestines and that the likely cause was my liver. The test on the liver showed that there was "derangement " of the liver, which the doctor said was to be expected. He said that my skin and eye balls may turn slightly yellow, and that if this happens I had to contact the hospital. He suggested that the odd stools may have been caused by the issues with the Liver.
• Fatigue - my sleep has been affected but I have not felt as much fatigue as I thought I would do. I still feel nauseous when thinking about the drugs they use so I have to practice positive mental imaging by carrying out distracting activities. 

Further ...

• I have more blood tests on Friday and Tuesday. 

So, I now need to rest and recovery from this ordeal. 

How are you at the moment Lolie?