Anyone ever take Doxil (lilposomal doxorubicin)

Helen1

Anyone ever take Doxil (lilposomal doxorubicin)

Helen1

Well it's official.  I start Doxil on the 13th.  It seems to be adrimycin's nicer cousin.  The info says its a 'light red' (quotation marks mine) fluid.  The doxil molecules are encapsulated in a fatty coating.  The lipsomes allow the doxorubicin to be in the circulation for longer so that a greater amount of the chemo is delivered to the cancer cells, whilst having fewer side effects on healthy tissue (end quote)

In the three years, I have been doing chemo, I have never heard of doxil.  Has anybody else?  Seems that all the s/e effects are the same,(hair loss, nausea, fatigue, anemia etc.)  but it also lists h/f syndrome. As if a year on xeloda wasn't enough of that one.

Helen

PS- I did learn something interesting at the orthopedic onc.  He said that bone mets can make air holes in your bones and that when the air pressure changes with the weather fronts, the bone pressure doesn't keep up withthe outside air pressure.  And you essentially get the "bends" (as in deep sea diving) in your bones, which are just as painful as the diving ones just a different area.  I have found this to be true.  Weather changes before a storm or cold front moves in, are very painful for me.  H.

LuAnnH

Helen, that little tidbit on the bone mets explains the pain away.  I knew I could feel the rain when it was here, just didn't know why.

I have heard of Doxil, in fact I am sure you will find alot of ladies respond that have tried it.  If not here then check out bcmets archieves on it, just search on doxil and I am sure you will find info on peoples side effects.

I have to say, just knowing it is related to A/C and it being red is enough to make me turn queasy just reading this.   I hope it works well and does its job for you.

styler977

Hi Helen

I started on Doxil almost four weeks ago.  I had my first treatment and I am scheduled for my second tx next week.  Side effects have not been too bad.  I find I get very tired; however. part of that can be attributed to the fact that I continue to work full time.  Very mild nausea that subsides, believe it or not, when I eat.  (so much for trying to loose weight).  So far my hair is still intact and I have not gotten this hand/foot syndrome that is noted as high on the side effect list.   Along with the Doxil I am also receiving Zometa for bone strengthening.  I am having increased bone pain in my back and hips and hoping that will start to calm down after more treatments.  Please keep me posted on how things progress and I will do the same.  Good luck and God bless.

Sharon

willowweed

Hi Helen,

I  was on Doxil for six months - ended in December 2007 when spots showed up on my liver which indicated progression.  However, the spots turned out to be hemangiomas (benign), not progression.  But I was ready to take a chemo break anyway.  I didn't lose my hair with Doxil.  I did have the burning hand/foot thing; numbness in my fingers and feet; and every month I would get a rash in a different place on my body.  One time it was all down one side and they thought it was shingles.  The next time it was on my thighs...  Anyway, I found the Doxil to be much more tolerable than adriamyacin.  And, I liked to kid all the other chemo buddies that I had just come in for my koolaid fix since my chemo was red and theirs' were colorless!!

Helen1

Thank you all for your responses.

I went thru a year on xeloda, and can deal with the hand food syndrome.  Losing my hair (for the 3rd time if I do ) is a non-issue.  i I was wondering about the nausea.  Did you find it to be severe or was it tolerable and when did it hit the worse?  I have had 2 heart attacks 1/2000 and 3/2001.  That prevented using adriamycin.  The muga 3 years ago was 45.  In may it was 56.  Still not good enough to chance the adriamycin, but he thinks doxil might be tolerable and will order another muga scan between the 1st and 2nd infusion.

If this one doesn't work he mentioned CMF.  The doxil will be the 8th drug I have been on in the past 3 years.  I'm tired

Helen

kbugmom

Helen I did not lose hair on doxil. Dr. thought I would. Was on in for a few months. Felt preety good on it. Mostly was tired. God bless... Keep us posted.

lizws

Helen, we used Doxil in the clinic I worked for years ago.  Many had great results with it and if I remember right they didn't have major nausea problems.  This was over 10 years ago though. 

You deserve to be tired but I know you well enough to know you will continue to fight.  You know where I am and how to find me anytime day or night.  I'm serious!

Hugs

Liz

ozzie2

Hi Helen I looked up this link for u ..

http://www.virtualwomenshealth.com/regimen.asp?regid=97

hope it helps with some of your questions ...good luck my friend..

hugs

oz

ps its called...   Doxorubicin (Liposomal)

ozzie2

Helen this site might be betta for u re information...

http://www.chemocare.com/bio/doxil.asp

hugs

oz

Helen1

Thanks ozzie.  The chemocare site was one of the most informative one I have ran across.  Doxil- is its main brand name in the states.  It doesn't seem to be as hateful as adriamycin.  However as with all new chemos- my stomach is already in knots.  Will let you know how it works out.

Liz- I keep getting emails that I send to you bouncing back as undeliverable.  Even when I use the reply button.

Helen

Helen1

Styler

I was wondering how your second treatment of doxil went.  I am 2 weeks past my first one.

The first week the pain in the mets areas was pretty extensive. I was taking 2 percoset every 4 hours w/ barely tolerable relief.  The second week, I began to have stomach problems, fatigue and some shortness of breath, but I figure that that is the lowered red blood cell count. Cant wait for the next two, and then we start all over again.

Helen

KariLynn

I did Doxil and didn't have too many S/Es but did end up with a skin rash where I had recently finiished radiation so didn't stay on it long.

kisersassy

I dont mean to sound insensitive but did you lose your hair with Xeloda?  This is the one thing that worries my grandma the most.

Thanks

Rhonda

Helen1

I did not lose my hair with xeloda. It started growing back after having lost it from other drugs.  It seem to come back in thicker and healthier than before as well. However,it does seem to be thinning with the doxicil

Helen

kisersassy

thanks Helen she will be comforted with that knowledge

Rhonda

styler977

Hi Helen

I developed an itchy rash on my upper and lower extremities two weeks after my second dose of Doxil.  I saw the Nurse practitioneer and she put me on Prednisone, which did absolutely nothing.    I am due for my third round this Thursday.  Not sure if they will continue on with the Doxil or suggest something else.  My back pain is not as bad as it had been since the Doxil, so I really do not want to stop it.  I guess I will just have to wait and see what the oncologist has to say on Thursday.

Sharon 

katie11

Helen,

Sorry I missed your post before and sorry to hear you're moving on to a new treatment (this is always scary).  I haven't had doxil myself but I know there are women on the boards who have had really good responses to this chemo.  I will be sending all the positive thoughts in the world that this works for you, too and with minimal side effects!

Keep going, sister!

Katie xx

snowyday

ONe thing to be careful of with Doxirubicin is the red can stain your underwear, so wear your old uglies or be sure to add a pantie liner. 

I hated all my chemo it sucked but it's doable.  Good luck to you.

Fitztwins

Huh, thanks for the issue on the rain and the bone pain. The days I have had horrible pain (like today) the weather has been horrid!

akshelley

All of the above responses were posted in 2008. Anyon currently on doxirubicin (liposomal) that can relate to what I am going through? I have Stage 4, with mets to lungs, bones, diaphragm, and lymph nodes. Everything except my lungs are stable with a variety of treatment over the past 2 & 3/4 years since diagnosis. I started this with my CA 27 & CA 29 over 400 ( the highest it has been since diagnosis) and a lot of pleural effusion. I have been extremely tired , sleeping 16-18 hours a day since I started, am extremely short of breathe, and a lot of coughing up sputum. And lovely constipation. Does it get easier infusion 2 and after? i feel so short of breathe, that I often think I'm not going to make it. I'm 43 and previously was in good health. Help !

steelrose

Hi akshelley…

I just finished six months of Doxil. I had about every side effect listed, including a weird lung infection that is supposedly common. It showed up on a CT scan, and was suspicious, but no lung mets. I'm thinking that this may be contributing to your breathing problems, etc., especially since you have lung mets. Is your doctor aware that you're having trouble? In my case, the side effects did cycle through and became more manageable over time. I hope this is the case with you too!! Also, fatigue is common on all chemos, but I would certainly let your doctor know if you're sleeping most of the day.

Thinking of you, and wishing you the best!

Rose.

akshelley

Thank you Rose. How did they diagnose your lung infection? What were the symptoms of that? Yes, Onc is aware, and he set me up with home oxygen concentrator for night time use. He says it's because of the cancer in my lungs causing the pleural fluid and pleuritic pain. Here's hoping the Doxil reduces the cancer in my lungs!

Before I started the Doxil, I had intermittent problems with food getting lodged at the end of my esophagus. It felt like a terrible pressure under my sternum, sometimes that would radiate under my heart and around to under right posterior ribcage. I had to force the food up & do deep breathing to feel better. It has just gotten worse since starting Doxil, and my doctors answer is to try to drink 3 Ensures a day. He also had me do a radiographic swallow evaluation & I have "narrowing" at the end of my esophagus. They won't know if it is metastatic cells or "Barretts Esophagitis" until they do a EGD scope & retrieve a biopsy. So, I'm frusterated, and feeling "fatalistic" like I just won't make it through this. But I have to fight. What helps you when you're at a low point mentally in your treatment & dealing with side effects?

Thank you for answering me. I'm feeling very alone in this, even though I have a great supportive husband & family.

steelrose

akshelley,

I had a cough that may or may not have been related to the lung infection. The radiologist was suspicious that it may be mets on my CT scan, but my oncologist ruled it out and said it was a Doxil side effect. I hope you're able to sleep at night with the help of the oxygen. It's all so difficult sometimes… ugh. I try to stay as busy as possible, despite the side effects. Planning things so I have something to look forward to, helps. Anything to get my mind off of cancer. And I sleep wherever and whenever I need to! Doxil made me especially tired.

I hope that your biopsy is negative, and that Doxil kicks those lung mets. I'm thinking of you… you're not alone in this!!

Rose.

akshelley

Thank you Rose. My biopsy was negative for cancer. I had an esophageal stricture that had narrowed so much, food wasn't passing. I have had two EGD's to dilate it, and have been put Omeprazole and Reglan to help with silent GERD & bowel emptying. Apparently it was unrelated to my cancer. I have had 5 Doxil infusions now. My CA 29 & 29 didn't go down until after infusion 3. The last two have slightly decreased and I'll take that to mean it is working. They put me on Wellbutrin to give me more energy, but I only stayed on it one month because of severe cotton mouth, skin rashes and purple feet. I nap every day.

Thank you for the encouragement. I am currently looking forward to watching my son, and my step son graduate high school. I am planning a party for them, so that is something to keep me busy. I am happy to be here to see them graduate. I also want to go on a cruise with my husband and/or sons this year if we can afford it. I live in Alaska so it's time to get out ^ go somewhere warm.

How are you doing in treatment? I am envious of Stage 1-3'rs who have a "chemo finish" or "last chemo". I will always be doing some type of treatment. I hope you are doing well in your treatment.

Shelley

steelrose

Hi Shelley!

I'm so glad that Doxil is working for you, and that your biopsy was negative! Doxil is very slow to work it seems, and it also caused my tumor markers to spike initially. But I know there are women here who have been on Doxil for a very long time and continue to do well. I had 6 rounds before switching to Ibrance/Aromasin.

Yes, yes, yes to that party and the cruise! Sounds wonderful. These are the things that keep us going. I'll be thinking of you… please let me know how you're doing…

Rose.

gciriani

Can anybody give me an idea of the skin problems caused by Doxil compared to HFS (hand foot syndrome) from Xeloda? My wife is scheduled to start Doxil next week. Last October she stopped taking Xeloda because of the HFS side effects.

akshelley

Hi Rose and hello to gciriani! Doxil caused a spike after month 7 infusion, but my Onc told me not to worry too much about it. He said sometimes that happens, and doesn't mean it stopped working. I am due in 3 weeks for Brain MRI, Bone Scan & CT (Chest/Abd/Pelvis). And repeat Ca 27/29. I am hopeful that I am able to stay on Doxil. I'll keep you posted, as I get the results back.

GCIRIANI...I had HFS on Xeloda in 2013. It was painful, and my feet/hands turned bright red, burned, and peeled several layers. I could not walk comfortably for a week at least, feeling like I was walking across hot coals. After a month I felt like I was walking upright normally. My hands took less time to recover, but I could not stop putting lotion on them continuously. Now, after 7 months of Doxil, my feet are permanently sensitive, but not painful. They are red, blanche white to the touch, and feel dry a lot. My hands only occasionally itch. But, this is three years, and MANY treatment modes later. My current feet situation may not be a result of Doxil at all, and your wife may not have any foot/hand involvement at all. As some encouragement, I didn't lose all my hair with Doxil. It thinned but pretty evenly. Also, I find less s/e with Doxil than the other chemo's and hormone blockers. Good luck to her and to you supporting her!

Thanks for your kindness Rose!

Shelley

gciriani

Thank you AKShelley!

My wife was on Xeloda for 18 months, and it was good for her. However, when we bumped up the dosage the HFS (or PPE) became intolerable. She was even taking a special cream formulation for HFS that is not available in the US, and which I was compounding at home; it improved the HFS side effects, making the situation manageable during the 18 months (except at the end when the dosage was increased). She has done the preliminary echo-cardiogram yesterday, and I think her heart is still strong. I look forward to reporting more in this thread.

gciriani

I'm posting this on behalf of SchnauzerMom who kindly PM'd me.

I read your post about your wife starting treatment with Doxil, and I want to wish both of you well and offer some encouragement from my experience with Doxil.

I had my 19th round of Doxil yesterday. My hands and feet are quite dry and cracked, but still very usable and mainly comfortable. Each time I have the Doxil infusions, the nurses ice my hands and feet (hate that part, but it is bearable). I developed an itchy, raised rash on thighs once, but steroid prescription took care of it. I do have a continued skin darkening around underarm area. Hair is thin and dry, but I still have a fair amount (it looks like orangutan hair, though, so I wear a wig, and feel much more like myself that way). I have hand and foot neuropathy from Taxol three years ago, but it has not worsened at all with the Doxil.

Yesterday my oncologist said he has never had a patient remain on Doxil this long. I am very grateful for this drug. (It's my sixth line protocol since metastasis almost four years ago.) I've had three echocardiograms with no refraction issues. Doxil is more heart-friendly than Adriamycin, which you probably already knew, so it isn't limited to the one-year life-time dosage.

I usually have a headache that starts two or three days after the Doxil infusion; it lasts a couple of days, but is easily managed with aspirin or ibuprofen. Good appetite and no weight loss.

I will be thinking of Debra and cheering for you both!

gciriani

I just bumped into a study about an effective remedy (not a palliative like vaseline, emollient etc.) for HFS, and which seems to even reverse symptoms:

Lademann J, Martschick A, Kluschke F, et al. Efficient prevention strategy against the development of a palmar-plantar erythrodysesthesia during chemotherapy. Skin Pharmacol Physiol. 2014;27(2):66-70. doi:10.1159/000351801..

I want to pursue this for my wife, because it is apparently effective for both Xeloda and Doxil. Has anybody tried or heard of it?