Starting Chemo Feb 2010?

My 3 week cycle is tx on Thurs, really bad day Sun (muscle weakness and digestive tract torn up), bone pain mid-week, then better by Thurs.  It's like the lights have turned on by Friday.  I still experience some fatigue after that, but much less of the other SEs.  I've got both eyelids twitching this morning.  The second round was much easier than the first, I think both cause I hydrated much more, started my otc's earlier, and realized things would get better.  Each person has her own experience, obviously, and I feel fortunate.  I hope that gives some hope. My first round, I felt panicked by the idea that things would not improve.

I don't think my onc nurse had ever been asked about alcohol before.  It seemed to take her aback, but, hey, we were in Provo.

Painting on steroids?  Painting's what I did when I recovered from my hysterectomy last year.  Went gang-busters and painted the whole house.  What a difference some energy makes.

Thinking of all of you going through tx this week.  Good wishes for few SEs.

Ok, I had a small glass of wine about 2 weeks after the first tx - and so far nothing bad has happened. My DH is absolutely against any alcohol passing my lips, but I'm gonna ask my onc about it anyway.

I'm 11 days out from my 2nd tx. Just feeling really blah (almost pre-flu like) and having trouble sleeping - which is an entirely new experience for me. I've slept through Alaskan neverending daylight summers with nary a "z" skipped so this is disturbing. I didn't bounce back like after the first tx, but I'm able to get up and go to work; just a bit slower...

I've learned my lesson about fluids and this time around made sure I got in plenty. As a result, I haven't broken out with acne like a 15 year old yet, the constipation wasn't as bad, as as far as I know my kidneys didn't take a beating this time.

I was happy to read the discussion about the taste buds and eating. I thought I was going crazy - nothing tastes the same, yet I keep stuffing my face! I think I just keep eating hoping that things will somehow magically taste normal. Of course, I've gained weight and I'm only 2 tx in!!! The bad part is that I lost 60lbs in the last year and I'm watching it go down the drain.

Mo - hope this is the end of the bleeding issue and you feel better.

Colleen, thank you for passing along the link to Dr. Gould's essay. His words really hit the spot for me today.

I had an infusion last Friday, and the past couple of days have been a little rougher than after my previous two treatments. Since Saturday night, I've been constantly hot and cold. I must have changed between t-shirt and sweatshirt at least 50 times. I'm not sure if it's hormonal hot flashes, more fun from leftover steroids in my system, or just chills brought on from treatment. Since Saturday night, I've looked and felt like a walking zombie, but the past two hours, I've started to come back to life. The hot and cold feelings are slowing down, and I just ate a healthy, taste-bud titillating lunch. Usually days 3 - 5 are my worst, so getting knocked down the day after treatment was a surprise.

The alcohol question is a difficult one, and I like reading everyone's response to it. It's such a personal decision, and I believe we all need to read every available study to figure out what is comfortable for each of us. I had been a moderate drinker on and off since my 20's, and I ended up giving it up, at least for now. My cancer was heavily estrogen positive, and alcohol may work to raise estrogen, so that made me wary. Plus, I'm 49 and most likely peri-menopausal, and my hormones were starting to act up before the diagnosis. Right now I feel more comfortable stopping those things that may affect estrogen. I can't say I'll never have another drink, but this feels right for me at this moment. Wine did great things for my cholesterol profile, but right now, the cancer is taking top priority.

Take care, all.

Cindy   

Grazie47 wrote "So how does that medical marijuana work?"   Medical Marijuana laws vary from state to state; check with NORML.org (National Organization for Marijuana Legalization) to see what the law specifically says in your state.   I did a quick check and you have the Medical Marijuana Act that goes into effect in New Jersey April 2010.  Congrats!  NJ is the 14th state to legalize medical marijuana.

And so I'm outing myself in this post (thanks "Writer" for coming out of the closet - or bathroom in your case - and giving me the courage to respond also).

As for how to use - depends again on what you are treating.  My doctor and I am treating PMPS (Post Mastectomy Pain Syndrome) with medical marijuana and it is working much better than the handful of pharmaceuticals that were originally prescribed to treat it .  Added benefit, I sleep like a baby every night (no more sleep aids - yeah!).   I use a massage oil made from hemp oil and medical marijuana (I use a high THC content in this oil since it is topical and there is no psychotropic effects with a topical application) this I massage on every morning doing the implant massage technique that was posted here last year.  This helps with the pins and needles I still feel up and down my breast bone and keeps my foobs moving freely.  I take "greenies," which look like alfalfa pills, midday as pain increases - greenies also have no psychotropic effect for me and allow me to continue to do my daily chores (babysit, clean house, garden, paint the house, etc).  End of the day, after all my work is done (and my body is hurting) I fire up the vaporizer and breath vapors until the pain is relieved.   

I don't recommend (and neither do doctors) smoking it because there are some of the same harmful effects smoking marijuana as there is smoking cigarettes (or salvia, or anything else you smoke).   There is also tincture made of marijuana, and yes butter, cooking oil, chocolates - etc.  Since this is a budding industry (forgive the pun) standardization is not in place so each batch of marijuana has to be tested to see how effective it will be for your needs (the THC content varies from one strain to another).  By testing I mean use it and see how effective it was compared to the last batch.  Need more or less to manage pain?   Once you join the medical marijuana community network and you will learn about the different strains and what works best for what need you are trying to address.  

Hope that helps.  Email me if you have any questions. 

Writer... how goes it with you?

Oh good.  So glad to hear the coughing has stopped.  That can hurt so much.

I developed diverticulitis during my treatment and I've had 2 flares since.  The marijuana was effective both times in managing pain - but I stayed away from greenies (they can be fiberous which for me was a problem during a flare up). I used tincture and vapors since I wasn't feeling good enough to do anything else anyway.  I also found the bland diet (I used the B.R.A.T diet) worked well for me too. 

Rest, heal and relax out in the open (as much as your local law allows :-) my dear... you deserve it!

Ladyredlocks

Thank you for your response.  I was more curious as how you go about legally purchasing Marijuana in California.  Yes, NJ has passed a medical marijuana law and believe me it will be years before they figure out how to distribute it. Although the law has been passed in NJ, just last week a man was sent to prison for growing it, this particular man has MS and will now go to prison. I would be curious if while in prison they treat his MS with marinol.  So as I said before it will take a long time before they work out the details.   I know several people who have used marijuana for MS and it has helped them tremendously, I find it hard to believe than anyone would deny someone relief from any ailment. 

At this time I personally feel no need for anything other than what my onc has prescribed, so have never asked my onc about marijuana and strongly believe at this time NO Doctor in NJ will touch it, can't say I blame them, who needs added legal battles.

I am all for legalizing marijuana, and taxing it. 

Grazie47,  I'm in Oregon so I'm not sure if the process will be the same for you... but from what my brother has said it sounds the same (he is in Sacramento - fighting stomach cancer and using medical marijuana to fight wasting)  ...  Once I had my prescription in hand I went to the DHS office, filled out forms, paid the state fee ($100 in Oregon if not on public assistance, $20 if you are).  Since I'm a cancer patient it got priority processed (4 weeks from script to card in hand).  I took that to my closest compassionate care lounge (The Cannabis Cafe in Portland) to "medicate" and learn.  A wonderful woman, Linda, taught me about the various strains and THC levels.  She also educated me on vaporizing, tincture, and making greenies.  The following Saturday I went to a NORML meeting where they gave me a couple plants.  At the same meeting I met a grower who took my plants and is growing them for me; in the mean time he gives me medicine as I need it. So my medicine is free (I do contribute/donate to fertilizer, etc but it is negligible - $20 last month for an ounce - this month it will probably be $50 because we are getting big bags of bat guano for all the plants).  From what I've learned from NORML this is generally how it is supposed to work in the medical marijuana community.  Hope that helps.  Ask away if you have anymore questions - this Cat is out of the bag now.  :-)

P.s, In Oregon some doctors are on board but the majority don't want to put their name on that prescription yet either.  I was lucky and referred to a pain management doc who was on board and had no problem prescribing it.  Ask around.  I find in the medical marijuana community word of mouth is modus operandi.

Well.. I knew this was too good to last.. My boss called that she has consulted our HR about my situation.. and they have requested a note from my Onc.. about any considerations or job restrictions that I have.. So I asked her if working from home is causing any work not to get done.. she said NO... this is just to protect me and the Company if for some reason I can not work... GEEZ.. I asked to work from home so I can recover from my cold and not risk getting another cold while half the office is sneezing.. Anyone have to deal with that?  If so, any suggestions?

makmak3030 - have you applied for coverage under FMLA? This should protect your job. My boss has been real good about letting me work from home and take off when I need to, and of course, I don't abuse that. I think I'd go crazy sitting at home all the time anyway!

The first thing my boss did was consult with HR about FMLA and encourage me to submit my paperwork asap - but this was mainly to protect me.

You might want to make a call to HR yourself and get the skinny on your rights. Of course, every company is different, but pay hasn't been an issue so far.

If you have 26 weeks paid for STD - that's a REAL good deal!

salsoda, I coughed for about a month. They put me on antibiotics fairly early, which didn't help, and it was clearly viral. In the early days I had the same problem sleeping, until I got codeine-- but that was just before tx #2, which only made the steroid-induced constipation worse.... sometimes you can't win! Later on it got more in my chest, and curiously I would cough like a fiend when I first went to bed (even sitting up reading), but then once I got to sleep I didn't cough all night. Talking and physical activity made it worse, so I tried to stay as quiet as possible (ha!)

I went on antibiotics the beginning of last week for a urinary tract infection, and the cough started diminishing-- probably coincidental, but it could have turned into a secondary infection.

 The cough really made the last round of chemo tougher. Can you get some codeine cough syrup? Just take Senokot with it. It was worth the constipation, which wasn't that bad-- you've got to get some sleep! 

Hi girls....I too was a "moderate" drinker prior to all this and seriously that was the only risk factor that I thought would apply to me. SInce I started chemo, I have very little taste for alcohol, but after about 10 days post chemo I can have a glass of wine and it tastes pretty good.

Starting Taxol next week....I got my RX for all that Decadron (steroid) so I am not really happy about the weight gain that I am probably going to have. Feel pretty good now since I have lost about 9 lbs since this all started. Everyone tells me not to worry about the weight gain, and also its better to gain than lose, but I was liking the new thinner me. Otherwise, just tired of being tired all the time, and the tachycardia and shortness of breath are even worse. I can't even take a shower without having to sit down immediately afterwards to catch my breath. This sucks!!!!

The other thing that sucks is Friday I have surgery to have my fractured Portacath removed. Saw my surgeon and he wants to put a new one in, but I am afraid I will have further problems. SO the idea we came up with is that I go in early to radiology and let them try to get a PICC line in. Not sure how successful that will be with my apparent lack of decent veins. Then to the OR to remove the Port. If the PICC attempt is unsuccessful, then I go to the OR for Port removal and then reinsert a new one. UGH.  I just can't wait to get this broken one out...I am imagining all kinds of horrific complications, like it migrates and gets stuck in my heart, or I throw a blood clot, or I get to the OR and they can't remove it all...right now, the vein above the port itself is swollen and gets more swollen when I lift my arm up or lay down flat, and I am sure that isn't normal either. My chest and shoulder ache.....arrrghhh.....2 more days to go till surgery.      

Mo--sorry about your sister....I feel so awful after chemo everybody pretty much knows to just leave me alone. I hate anyone around me when I am sick. Good luck with her. Glad the bleeding wasn't as bad this time around too. Hang in there! (still waiting for my period, 2 wks late)....

grdnslve- I had AC 2 wk cycle for 4 cycles and I usually wouldnt feel good till about 5-6 days after treatment. Only had nausea/vomiting the first round, otherwise just kind of no appetite and very tired. I kinda felt like I had the flu every time I had my chemo. The tachycardia is the only thing that really bothers me.  And my white count has been above 10 (thanks Neulasta).  I actually have been able to work, missing only about a day and a half on chemo week  But thank God I am finally done with the AC and bring on the Taxol.  woohoo!  

Wishing everyone a decent SE free day!  And I too am going to live till I am 90. We are all gonna beat this. F*** BC.    Take care sisters!  

Well, I will be putting my wig to good use today-no sooner than telling my work I could fill in, and I got called in today-yea!  It's only 5 hours, but I will be so glad to get out of the house.  It will be so nice to see everyone and catch up on the gossip-ha.  Now I just have to find some clothes to fit that don't look so weird with these coconuts on my chest...

I hope everyone has a great day!

Hi, everyone - Toni (teemee) - we're all right there with you today.  Remember, lots of fluids - before and for many days after.  I really believe that's what gets you through this with less issues.  Make sure you have your Zofran or Compazine or whatever they are giving you - I've seen on the board where some people have to wait to get this filled until they start having the nausea - just have them ready in case.  I know you are anxious and curious about today, but it really, for most of us, seemed to be uneventful - the anticipation is the worst part. I always take in a blanket from home, just because it's more of a personal touch than the hospital ones and it's always  a bit nippy in the private suites - not sure what it's like in LA though.   Big hugs to you today - let us all know how you make out.   

Had my third treatment yesterday.  All the bleeding issues have stopped - hemoglobin was a whopping 13 from a 6 before transfusion so that's awesome.  Platelets rebounded enough to have the treament and other than buzzing on the steroids, I'm doing fine right now.  I  have found that rather than lay there in bud frustated because I can't sleep, I just get up and do something - like clean up, enjoy the peace and quiet of the house while just getting small things done - then I usually can fall back to sleep for a few hours.  The hard part is keeping my two kittens quiet because they want to wake everyone in the house because they assume it's play time!  I must say they've been a joy to have through all this - even though I was against it at first.  I love having them sleep on my for afternoon naps - very comforting. 

Anyway, hope everyone is doing well.  I have to say I thoroughly enjoyed al the chatter about the medical marijuana - took me back and I was sitting here getting a contact buzz, I swear!  Pennsylvania doesn't have legalization so I don't think I'll be getting it legally, but I have a stash that a friend gave me when he heard my news (an old stoner buddy from my past - they're always reliable!).  It sits in a drawer and if I need it, I think I still remember how to make a pipe out of tinfoil!  And, I don't have to worry about igniting my hair, like I used to! 

Hugs and smiles to all - off to steroid buzz around the house some more!  Take care - Mo