chisue, Wishing you great success with the new medication. Take care.

Best wishes for success and comfort.

MM: cease and desist! Good thoughts to you, Chisue!

You will find something to suppress the MM. Keep thinking positive thoughts.

Unless something has already been told to you or you already know by looking up the meds some of those in the stomach shots are self injected. If you do not know ask before you are surprised. Not a cancer medication and I do not remember what it was for my husband was given one of those surprises. He could not do it and luckily he found a clinic that would. He did not want me to do it.

I hope the new meds works well for you, @chisue.

Sending very good wishes and very positive thoughts your way.

I'll be thinking of you and hoping the new meds to their thing.

Sending thoughts and prayers that the change will work for you.

Sending you all the best in this fight against this most terrible monster disease.

It's sounds like a tough road ahead for you, but you sound strong and able. We are all pulling for you, you know. Please take care of your self and rest as much as

you can. Hugs.

I hope this new treatment is the one that works! Get better soon my friend!

chisue, my mother lived with MM for 18 years (in the days before there was much in the way of treatment), so I understand a bit of what you're dealing with. I hope for the best for you!

Good thoughts coming your way that this works for you!

Sounds like a plan and hope it works...sending you cancer-fighting and healing thoughts your way.

Glad your oncologist is "on the attack." Carry on, dear Sue! Sending heartfelt wishes for success and not too much discomfort.

You can do this! The anti-nausea medications are pretty good today.

BTW: Since I was diagnosed with "smoldering" MM I have been really trying to educate myself as to what to expect. But I learned something new today. You stated "That sluggish blood makes us MM people cold!" I have to keep my office so warm that staff would stand at the door and talk to me. I hadn't associated with the MM. I just thought it was just a factor of aging.

Good luck!

Chisue, wishing you success with the new chemo treatments. And hope you have minimal side effects.

so much change in treatment in the last 10 years. All improving. Here's my prayers for your health!

Wishing you didn't have to go through this......praying for great success with the new treatment. Hugs.

Glad you have a good team. So very very sorry that you have to continue with treatments. So very glad there are treatments! Sending good healing thoughts! Also sending C strongly thought cease and desist thoughts.

Praying that these new meds work for you.

I am glad you and the doctor have a plan and best of luck.

Good luck!

Chisue, I’m so sorry to hear about your news. Revlimed along with Velcase is what my husband was on until he went into remission, after that he was on a low dose of Revlimed for many years and he did very well on it. Outside of some tiredness there were no side effects. I have you in my thoughts, please keep me posted.

Thinking about you, Sue, and praying for a successful outcome. I'm really sorry you have to go through this!

Chisue, I’m sorry to hear you are going through more, and wish you wellness!

I hope the new treatment course works well for you.

Best wishes that the new treatment results in a successful outcome!

Thank you all! It really HELPS!

Now... you all know about 'best laid plans'? Big "Whoops!" from my oncologist this morning. Darvalex by injection was approved by the FDA last year. However, Northwestern hasn't started using the injection form yet -- not in the city nor in any of the suburban branches (like mine).

I would have to have infusion -- hours and hours instead of just two. Blech. Although...should I have a reaction, an infusion can be halted. Maybe injection will be possible before long. I'd love to avoid having a port installed.

Or...there are alternatives, like X plus the very expensive Revlimid. ($2650/first month, out of pocket, under my Part D plan. It then averages down to become 'only' $12K/year.)

Nothing *cures* MM -- the goal is just to 'tame' it for a while. My docs don't use the term 'remission'. I'll have to take something as long as I want to live, as long as something works. At least options exist. There were none when my DM died of blood cancer forty years ago.

FinallyHome -- I hope you're having regular blood tests. My primary failed to watch my IgG in the years before MGUS worsened -- with an enormous IgG and an M-Spike over 3.0. (She also never told me I *had* MGUS. I had to beg for that blood test.)

Lukki -- I really appreciate your input. It's one thing for an old lady like be to have this. Totally unfair for your DH to have to put up with MM so early and for so long!

Hoping along with all the others here that this is the answer for you. Modern medicine has so many interesting achievements to help us all. Miracles. May this be your miracle.

Thinking of you, Chisue and hoping for good health with your new regimen.

Thank you Sue, I have to agree, his back was so severe and yet he worked everyday until his stem cell transplant last August. Sadly, my dear sweet man passed away last Wednesday in the middle of the night. He’d been in decline for a couple of months and after the last hospital stay in early May, his only wish was to be home with me. I’ve wanted to post about it but haven’t been able to. It’s really not fair.

Sorry to hear about the setback. Sending good thoughts your way.

Oh my gosh, Lukki, I just read your post. I am so, so sorry. You and your husband had a very long journey though all that. No, it's not fair at all.

Sue, I had to come back to ready your full post about the treatment plan they are recommending for you. Is this plan the maintenance plan to keep the counts stable or is this plan because your numbers are up? There’s a difference. After the Revlimed quit working, the doctors tried several treatments on my husband, I don’t recall all the long conveluted names but Darvalex sounds familiar. I know one was a shot but another was a full day of infusions once a month. Still, the side effects were minimal, he was just uber tired, some of which was attributed to the rapid increase of the lightchains in his blood.

Now, I’m sure your doctors won’t appreciate me saying this at all, but during his 8 years of treatment, my DH had tons of infusions, but never had a port. He was encouraged (even strongly encouraged) to have one installed, but he didn’t want one and would never agree to it. What were they going to do? Refuse treatment? No, Why? Because this journey is about you and what you feel comfortable with. So, if you don’t want a port, if that part makes the process less bearable for you, tell them no and to find a vein. Sure over a long period of time it can scar your veins, but for now...until that starts to happen, just tell them you don’t want one. There is a nurse at our clinic who has become a dear friend. She’s been a Cancer Nurse for years and years and even she admitted the port is pushed in part because it makes their job easier, which to be honest, really irks me. It’s not supposed to be about them.

Also, are you aware that some of the drug companies are offering huge rebates on their drugs? One day out of the blue, the doctor’s office called to let me know I had a bill for 11,000 which was for 2 treatments the insurance was refusing to pay. But she said, don’t panic, the drug company was offering a rebate for all but a 5.00 copay for each treatment. She ASKED if I’d like to go that route. (silly question) and said that she’d even facilitate the paperwork for me. So you might want to inquire about that with your clinic’s Administrator.

I don’t get advisories when someone posts to me, so I will watch the thread for your response. I do hope your numbers aren’t rising.

Lukki Irish....I'm so sorry for your loss. That is so hard. ((((hugs))))

I finished treatment for breast cancer in February after a rough year of treatment. I had a port placed before my first treatment. I'm not sure I completely agree with the comment that it is for the nurses convenience (and I'm not just saying that as an RN).

Many of the medicines are very caustic to your veins and are diluted by entering into a large vein versus a smaller peripheral vein. If a smaller vein would blow and the meds "leak" into your skin and tissue, tissue could be killed or permanently damaged. Repeated puncture of smaller veins can build up scar tissue and make successful IV starts more difficult. I am not sure of your age, but your veins become more fragile and prone to "blowing" as you age.

Due to excessive diarrhea, I received IV fluids several times a week. While I have good veins, I do not have enough to have perhaps 12 IV starts a month. I want to save my veins, I hope to live at least another 20 years.

The implanted ports are much more convenient that the external ones used 20 years ago. I could shower or swim with no restrictions.

To me, my port was a sign of my treatment but it was not the main one. Hair loss sure was!!

Lukki, I'm so sorry to hear about your DH.

Hugs and prayers Chisue. Thinking of you.

Sue

RNmomof2 - Thank you for explaining that. There are so many different types of chemo that it makes sense that the need for a port could vary depending on the drug and/or circumstances. Of course, I can only go by what our friend / Nurse said about the port for Multple Myeloma treatments, the scaring (and how much easier it makes it). The only time my husband had to use any type of line was during his stem cell transplant. He had to have a pic line and he found that to be very uncomfortable and painful; that’s also the only time he experienced any type of hair loss as well. Everyone is different and reacts differently to proposed treatments/methods, if someone isn’t comfortable with something I think it’s really key that the patient feel there is room for a conversation and even the right to find alternative routes if they aren’t comfortable with what is being proposed.

I’m sorry you had to go through such a harsh treatment plan, Cancer is a scary, life changing experience that no one should have to go through. I hope you have another 20 (plus) years too!

Edited to add: In retrospect, I probably shouldn’t have worded my other post as I did. What I should have said is that if you have reservations regarding any part of the treatment plan you’re preparing to receive, regardless of what it is, you should have a conversation with your doctor about it. Try to find out if something like the port is aboslutely necessary, or if there are other alternatives that might work just as well for you. In our case, with the chemo treatments my husband received, a port was not mandatory.

Lukki -- My heart breaks for you. I'll leave it at that; only posting here because you aren't getting PMs properly on Houzz.

When I was in hospital for my 'bleed' after colon resection, I was pestered to have a transfusion. (I couldn't be discharged until my blood levels improved.) I'd never had one and didn't want one. I had a great night shift RN. Yolanda would remind me, "You're the boss of you! Don't let these doctors push you around!" I waited it out.

Thank you Sue, you can email me if you’d like, lukkiirish at gmail . com

I have to agree with Yolanda! I’m glad my DH didn’t allow something to be done that he wasn’t comfortable with.

When my Mother was ill with cancer, she wasn’t one to question her doctors she just did what she was told. She ended up having to have a port. She told me afterwards that it was uncomfortable and making her miserable. Like my husband, all she wanted was to be at home. But once again, she listened to those who said she needed to be in the hospital where she passed, even though Hospice could have provided care at home. (which to be honest still upsets me, because I was out of state and couldn’t be there to care for her myself).

There is nothing wrong with trying to find an alternative to something that doesn’t feel right to you. (((Huges)))