I rang the Royal this morning to confirm that I wanted to go ahead with Doxorubicin and even though I know it had been a foregone conclusion that this was the way I would go, especially following B’s and mine indepth discussion* of treatment options, I knew I had made the right decision because as soon as I got off the phone I felt lighter. That feeling that comes from knowing you have made the right choice. And it’s red – how cool is that? I’m a sucker for brightly coloured medication.
However this means that I won’t be starting Velcade today and the Day Unit are ringing me back later with an appointment for the PICC line to be fitted. Now the one thing I particularly wasn’t looking forward to on my SCT holiday was the Hickman line and even though I had to look away at the sight of one on my recent holiday, I didn’t actually mind it as long as it wasn’t hooked up to the dreaded IV machine!
On Sunday the site of Sean’s PICC line nearly caused a domestic. As we all know men are notoriously bad at multi tasking – I’m sure it’s been clinically proven but ‘we’ all just KNOW anyway – so no arguing. The company B works for is changing its pension provider and forms had to be filled in. B kindly brought these in for me on my recent holiday and I completed them. However one form I misinterpreted, said he didn’t need it and ripped it up and apparently he needed that one too!
This form was to the old provider and the bit that B needed to complete wanted information on the new provider – basic information which we couldn’t find on anything. So B came into the room with his pension stuff just as I was taking another gander (look) at Sean’s PICC line and having a minor ohhh errrr moment. Having read about it going in previously there were some things I wanted to get off my chest – I mean I’d had an ohhh moment when I first saw it but felt the additional errrr when I realised I may soon have one of my very own. Meanwhile B was sat next to me staring at a piece of pension paperwork and even though I knew he wasn’t listening I carried on regardless and then when I had finished he asked a pension related question!
* This should be read on Saturday night B was coming out of the bedroom, I was heading into the bathroom and B said something along the lines of ‘So this other drug may make your hair fall out?’ I replied ‘Yes and it might make me sick.’ B responded ‘I’d rather have you bald than bonkers.’ Discussion over. Don’t worry all really important major decisions are made in a similar way – there’s none of this debating the ins and outs for hours, completing pro and con lists, and the little nuances that may make a big difference.
Feresaknit's Blog 
Better to be bald than bonkers…great line!
I did a bit of research (Stefano got home from work late yest evening and was too tired to assemble it…so I am using our laptop, which is bloody SLOOOOW and annoying but better than nothing; I would send you a private e-mail on this topic, but I cannot access my e-box until my computer is up and running again, sigh), and it turns out that doxorubicin is enhanced by curcumin, yes, even in MM…See: http://www.ncbi.nlm.nih.gov/pubmed/20924967 And there are also many other studies in PubMed…I simply picked one. If you think it might be a good idea, ask your docs, and, if there is general agreement, I will send you a bottle or two…easy peasy…
Hugs from Firenze! 🙂
Oops, that first “it” = my dead computer…sorry about that…
Better bald than bonkers … that one cracked me up 🙂
Please check with your docs before taking anything other than what they have prescribed. I know for a fact that green tea stops Velcade working.
Your bald AND bonkers friend. x
And grapefruit – I am of course now craving both! ;D
You are right, Mike, but I feel that I should add a personal bit of news to this issue. After reading the full Velcade-EGCG study and reporting it about on my blog, I asked Dr. Brian Durie, whom I met at a MM patient seminar here in Florence, about it, and he replied that even those who are on Velcade can still drink green tea, if they want…just NOT on their Velcade days.
As for curcumin, it does not interact in a negative sense with doxorubicin (on the contrary, it appears to enhance it). But, as I wrote earlier today, it is always a good idea to do your own research, then check with your doctors before taking anything…
Haha I am glad we are not the only ones to make decisions in a similiar way !! Dont recall any effect on my hair but I wasnt on it for long As for the PICC line , go for it , they are brilliant , much much better than blooming hickman I have had 3 so far and wouldnt hesitate , painless going in and out xx
What Sean said about the doctors and nurses probably never having had such things done to them is undoubtably true, although I knew of one teaching hospital in Boston, MA that routinely ‘exposed’ their medical students to such installations (this was 20 years ago however) so they could be aware of what it was like.
Hope your installation goes better than his did, and that you are soon on your way to feeling better. And I would add to Margaret’s comment about curcumin, that it’s your body and if you want to make decisions about it, you should bloody well be able to do that. Hmmm?
Hi there.
This is Hanna here. While we don’t know each other, we share a mutual blogger/friend in Margaret. I hope you don’t mind me sharing my personal experiences.
– Hickman line – I was terrified of it and didn’t like the thought of it hanging out of me. But once I realized how convenient it was, especially in the hospital after my ASCT. They kept waking me up to check my vitals, take blood if I had fever, yada yada. Well, I pulled it out so it was exposed. Then I attached it to my top so they couldn’t pull it out f me by accident. I told them if I’m sleeping do what you gotta do but DON’T talk to me or wake me up. I was “aware” they were doing stuff, but so dosey (lots of anti-nauseant) that I stayed asleep.
– Bald. I did not get bald from Velcade/Doxil. But later when I needed stronger stuff because and had the stem cell transplant, I did. I held off shaving my head which was a mistake. I don’t have to explain why – esp if I tell you I had long hair. Anyhow the day after my transplant the nurse asked if she could shave my head. That was the most freeing experience and we laughed the whole time. I would GLADLY be bald the rest of my life if it meant no more MM. In the end I really enjoyed the feeling – especially after showers when I didn’t have to dry my hair.
– When I had Velcade / DOXIL I had very few side effects but maybe that’s just me. Try to keep positive and hope you have the same.
– Now I have to share my experience with you but it didn’t happen to the other patients in this clinical trial. I tell you this so you keep an eye on it. The skin on my left butt cheek started turning red. At first I didn’t pay attention. Then I noticed it because it was slightly uncomfortable. I should have alerted my onc sooner, because then it turned flaming red and she described it that I have a sunburn on the butt cheek from the inside. Very very sore – couldn’t sit on it. We stopped that component of the clinical trial on approval from the provider. So please be aware of your skin as I guess it could happen anywhere. You can no longer tell where the burn was.
Please don’t forget that famous line “the only thing you have to fear is fear itself”. I wish you the best of luck. We are all rooting for you.
Hanna O.
Ok – do NOT try to write a blog response when your daughter keeps talking to you. I will not comment on the obvious errors. But what I meant to say above about DOXIL was that at first I had no obvious side effects. That is I was high functioning with the Velcade (3 x week) and Doxil. Towards the end of the second month … the rest is correct. Sorry about that. I’ve learned my lesson about writing, thinking and talking.
GOOD LUCK!!
HannaO
There are some folks who get dry, scaley hands(feet too maybe) on Doxil. I don’t know if you monitor the ACOR myeloma listserv but if you check the archives,
people had sent in some info about very specific cremes/ointments that helped them immensely with this side effect.