Revlimid

[Chirley]

Hi, my haemotologist says he wants to start me on Revlimid. He told me to look it up on the net and next time I see him he will answer any questions that I have. He said that it has a lot of potential side effects which he will discuss with me before starting treatment.

I understand that one of the most troublesome side effects is neutropenia. I already have neutrophils which vary between 0.5 and 1.00. I also have lymphocytes which don't go above 0.5.

Does anyone have any personal experience with Revlimid? I am particularly interested in hearing from anyone who already had a low neutrophil count before starting treatment.

I'm looking forward to treatment because he said it might make me transfusion free but at the same time, it's a bit scary to think it might make me more susceptible to infections. My BMB shows decreased granulopoiesis as well as hypocellurarity, perhaps the effects of the Revlimid can be offset with G CSF injections?

Also, I noticed that nausea can be one of the side effects. I don't tolerate nausea well and given a choice, I would prefer pain to nausea any day. Has nausea been a problem for anyone else who has taken this drug?

I would really love to hear from anyone with experience with this.

Thanks

Chirley

[Birgitta-A]

Hi Chirley,
I have no personal experience of Revlimid but think you are right about getting Neupogen or similar drugs that increase the neutrophils.

Then there are many articles about preventing nausea - I am dreading that adverse reaction like you do - and have read much about nausea because I prepare myself for Vidaza treatment.

http://theoncologist.alphamedpress.o...full/12/9/1143

In short they recommend a combination of 3 kinds of drugs:
1 Serotonin inhibitors:
Aloxi palonosetron or
Kytril granisetron or
Navoban tropisetron or
Zofran ondansetron

2 NK1-receptor blockers
Emend aprepitant

3 Steroids
Dexacortal dexametason

Hope you will have positive effects and no adverse reactions!
Kind regards
Birgitta-A

[Vera W]

I take a 8 mg Zofran and a dexamethasone about 45 minutes before my vidaza injections and I have never had bad nausea. The drugs do seem to help alot. Chirley, do the research and ask lots of questions! My best to you

[katherineann59]

Hi Vera,
I, too, get vidaza. I'd like to ask you about the antinausea meds you take. I have been taking anzemet. Although it does help with the nausea, the drug makes me extremely tired. This makes work difficult as often times I have to get my vidaza before work. How does the zofran affect you? I am beginning my 4th year on vidaza. It's the only chemo I've ever been given. So far, it has managed to keep me in remission. I have a bmb coming up soon, I think to guage the progression of this disease. Also, do you get skin burns from the shots? I was taking it as an IV for awhile, but was having trouble with my veins, so they switched me back to shots. I always get blisters on the site which peel the week after treatment. Just wondering if you have any similar kind of reaction. Thanks for your help and glad to hear you are doing so well.
Kathy

[Vera W]

Hi Kathy, fours years on Vidaza, wow. I will be on my 8th cycle tomorrow and last month I was going nuts. Big red bruised Wheels that feel like a bad sunburn It peels and I get hematomas underneath my skin. But it does the trick! The doctor has prescribed a stronger cortisone cream. I had Anzemet, it is the samples that he hands out. Sometimes I get a little dizzy but all the meds I take cause dizziness so I really don't know what causes it!The tiredness might just be due to the fact that this drug really vamps up your system, that is my main complaint tiredness! The first couple of shots in the cycle I feel like I have been beat up but after that it mellows out. Any way..we have to go onward and forward! Take care

[knstone]

I was on Revlimid for 18 months, it was easy to take, very few side effects.
Some constipation in my case with all the drugs I've used.

My platelets and WBC (ANC) dropped toward the end and we had to stop the
Revlimid.

I've tried Vidaza over the past 5 months but without much success.
It is much harder to take and is more like a conventional chemo. The
blood counts drop to a minumum approx 10-17 days after each treatment
cycle, then hopefully recover before the next cycle. Injection sites are somewhat painful for about a week if subq injections are used.

I've started a low dose Dacogen treatment program as of one week ago.

Revlimid is very easy since it is a pill. The costs are high unless you have
good insurance. It runs about $8,000/month as the retail price. On Medicare part D it is very expensive.

Funny thing is that Vidaza or Dacogen are more expensive per month but
Medicare part B pays most of their cost.

Hope this helps a little.

[Chirley]

Thanks for the replies, sorry it's taken so long to respond. I'm building a house at the moment as well as working and I'm soooo tired that I am frightened of falling asleep while I'm driving.

I have an appointment for Saturday for a 3 unit transfusion in day care and I'll also see my haematologist about starting the Revlimid. I hope my neutrophils have come up a bit or he might not let me take it. I have my fingers crossed because I really want to have a break from the transfusions. I have had over 150 units of blood and have developed antibodies and have to have hydrocortisone and phenergan as a premed. Even then I have had reactions that have been very dramatic and required hospital admission and treatment and taking prednisone when I've been discharged. It now takes at least 24 hours notice to be able to cross match blood for me and sometimes I have to wait until the next day to get the last unit because they have been unable to find suitable blood for me.

I have another question. I quite often get a sore mouth. It feels like when you have mouth ulcers but there aren't any ulcers visible. There seem to be white lumps under my tongue which are tender to touch and these stay tender for a week or more. Does anybody else get this? Do you know what it is? Is there any treatment available?

Thanks,

Chirley

[Vera W]

Hi Chirley,
About 8 months before my MDS DX I started having sores in my mouth. It was kind of like you get when you burn your tongue on something hot. In fact that would be how it started alot my tongue would be very sensitive to hot food, I would burn it and it seems like the wheels in my mouth would multiply. It was trouble some, I researched it and asked my dental hygienist, dentist and PCP about it and the best we could figure out was geographic tongue. It did go away but would come back fast. It worried me because I had never had it before and was concerned that it was a precursor to something being wrong in my body. AH HA and I was right! That was one of the first things my hematologist asked me, if I had sores in my mouth? Then I noticed the cycle and every time my neutrophils and WBC dropped I would get them. Just think of the Bacteria we have in our mouths and you figure with low white counts something has to go! Ever since I have been on the vidaza my tongue is beautiful. Sometimes in the low point of the cycle I notice a few but they resolve very fast. Hopefully after a while on revlimid you will see improvement. Ask your doc or dentist about some type of non-alcoholic mouth rinse, there are lot's of products and they will help! I worry that my mouth will be a big area of problems with my transplant but at least I have some experience with it!
We had our home built and it was definitely one of the best experiences of my life..Enjoy this!!! Savor every moment..and don't Stress!! Take care

[launch]

Hi Chirley,
My husband, Ron, has MDS (dx in Feb'09). During his first round of chemo (Vidaza), he developed mouth sores which we treated with over-the-counter mouth rinse "BIOTENE". This brand (BIOTENE) also has several other products such as toothpaste, mouth sprays & gum. The product contains Bacteria fighting enzymes.. which helps fight what's causing the sores. As preventative maintenance, my husband continues to use this product during chemo treatment... rinsing his mouth with it after meals.... He hasn't had any recurrance of mouth sores since the intial onset during this cycle #1 of chemo treatment.

Good luck,
Cindy

[Chirley]

The last week or two have gone very slowly. I have been waiting for my next appointment/transfusion so I could discuss and perhaps start on the Revlimid. I really wanted to reduce or stop the blood transfusions.

Well, my appointment was this morning. I turned up and was told that my doctor is in Germany on a conference followed by his holidays and that this other haematologist I had never met was covering for him. This new haematologist acted as if I should be grateful that he was willing to spend 60 seconds talking to me. He reduced my transfusion from 3 units to 2 units and instead of 3 weeks he reduced the time to 2 weeks. He told me that he would have me attend weekly, if I was his patient. I have to take a day off work without pay, every time I have a transfusion so I lose about $500 every three weeks but until my doctor comes back, I'll be losing $500 every 2 weeks. As i'm building a house at the moment, I need every cent I can get. It's very frustrating.

I also asked if I could get the results of the bone marrow cytogenetics so I could start the Revlimid. He told me that he couldn't give me results like that and it is up to my regular doctor to give me results and discuss treatment changes and medications.

I keep telling myself that patients need patience.

I really appreciate how good my regular haematolgist is at communicating with me. (how dare he go on holiday without my permission). Really, I hope he has a good holiday, he's been looking very tired lately.

Thanks for the answers everyone. I found a betadine mouth wash that works for me and the white lumps are gone again. I suppose with my WCC hovering around 1.0, I should expect things like that to happen.

Chirley

[Birgitta-A]

Hi Chirley,
I know that your disease is very special but perhaps you can try Vitamine B3 for your low white blood cells. I googled Vitamine B3 (niacin) and did not find reports on blast cell increase. It can affect platelets in a negative way but only if you take megadoses (3000 mg/day) because those doses can be bad for the liver. I take 250 mg/day but have not seen any positive effect yet.
http://www.ncbi.nlm.nih.gov/pubmed/19182797
Kind regards
Birgitta-A

[Chirley]

Thanks for that Birgitta.

My doctor has me on B6 and Folic Acid and I have just finished a course of B12 injections but he never mentioned the B3. Every time I have a cross match for the transfusion he also orders a homocysteine level. (so I have to fast every time). I think he is monitoring my compliance with taking the vitamins.


It's a public holiday here for the Queens' birthday and the sun is shining for the first time in weeks. It's absolutely beautiful. We normally have dry cool (but not cold) winters but this one has been wet and warm so far. It looks as if it's finally becoming normal.

Chirley

[Chirley]

Hi, I went for my regular transfusion on Saturday and once again, my doctor was away. The day care nurse gave me my blood results and was concerned that the neutrophils were very low. It's now Monday afternoon and I haven't been out of the house since Saturday but I've still managed to get a sore throat somehow. I don't have any fever and otherwise feel reasonably well. I rang day care and the nurse told me that she contacted my doctor first thing this morning and that he thought I should be admitted to hospital and that he would ring me himself. I've heard nothing from him.

My neutrophils are 0.4 and my lymphocytes are 0.2

I know that some thing needs to be done to increase my neutrophils but I'm not sure of the significance of the low lymphocyte count. Are low lymphocytes as dangerous as low neutrophils?

I dread being in isolation in hospital. I'm hoping for a spontaneous recovery of the neut count. Wish me luck.

Chirley

[Birgitta-A]

Hi Chirley,
Hope they will give you effective antibiotics and Neupogen injections! Neutrophils 0.5 or less are very dangerous and you can get neutropenic fever from your own infectious agents.
Kind regards
Birgitta-A
Neutropenic fever Sept 2007. Since then I take Neupogen 2 injections/week.