[chloe]

Feeling Disheartened

by chloe on Fri Jul 05, 2013 4:56 am

Hi My name is Chloe I'm 23 and my mother was diagnosed with this awful cancer March this year. She is 52 years old. for the past few months she has had radiotherapy on her back (where the myeloma began) and on her skull where it had also appeared. She has been having chemo twice a week and was due for a stemcell transplant on the 15th July.

Three days ago she was admitted into hospital due to numbness on her chin, and a lump she found in her breast. After further tests, this revealed the lump was more myeloma (we are still to find out what the numbness is caused by). As a result it turns out the chemo treatment she is currently going through has not been effective. Her specialist has decided to change her chemo and she will be having intense chemo next week for four days and nights straight! (I feel sorry for her already)

I guess I'm feeling sad as I thought the treatment was working and I thought everything was ok.. It's hard enough as it is watching someone you love go through such a horrific time. Has anybody else had a similar experience with the chemo not being effective and alternative plans introduced? I'm hoping for a hopeful story ... Her doctor is hoping the new chemo plan will shrink the myeloma and that the stemcell replacement will be able to take place.

I just pray she gets into remission. I struggle to picture a world without my mum.

Thanks

Chloe

[chloe]

Re: Feeling Disheartened

by chloe on Fri Jul 05, 2013 4:58 am

I also failed to mention that the myeloma in her skull has caused her to have double vision in her left eye. Her vision has not been the same for 2 months now. Has anybody else every experienced this? I hope her vision returns

[Joy]

Re: Feeling Disheartened

by Joy on Fri Jul 05, 2013 5:33 pm

Hi Chloe,
I'm fairly new to all of this myself so I can't answer your question about the chemo but hopefully someone else has some experience that has a positive outcome. I did want to say that I had the chin numbness and it has almost disappeared since I've been on the chemo. My guess is that a nerve was exposed somewhere on my skull and maybe now its been slightly healed in that spot. I really don't know.
I wish for the best for you and your mom. I know that there are many drug combinations possible if one group is not working. This week I saw my myeloma specialist at Dana Farber and I was asking him about what he would do after a relapse. He rattled off so many different drug possibilities that it gave me some hope that they might be able to piece together some control of my disease for a more extended period even though I'm told that it appears to be aggressive. Hopefully your mom's new chemo will be the right combination for her.
It might be useful for you to mention which chemo drugs she has been on and what her new ones are, in order for others to have more specific input.
Your mom is lucky to have such a caring daughter. All the best to you.

[elizabethmwm]

Re: Feeling Disheartened

by elizabethmwm on Fri Jul 05, 2013 9:35 pm

I started my induction therapy last September with Revlimid/Velcade/Dexamethasone. I did not tolerate it well and saw only a small reduction in my M-protein and % of plasma cells in my bone marrow. So, the doctor recommended what he called modified CVAD which was an inpatient 4 day IV chemo regimen. It sounds like what your Mom might be going to do. I tolerated it well (although I did lose my hair) and I had a really good response and significant lowering of my numbers.

I returned to the RVD therapy for 3 more months and tolerated it well. I had my stem cell transplant 2/26/13. I needed that more aggressive treatment to get "ahead" of the myeloma and it worked!

I wish your Mom well.

[anna78]

Re: Feeling Disheartened

by anna78 on Mon Jul 08, 2013 6:39 pm

Hi Chloe!

My Mom has already gone through the stem cell transplant last fall, but has relapsed May this year. Around that time, she also developed the numb chin you describe: I aksed about this here a little while ago and it seems that a likely cause is a base of skull lesion. As far as I understand it, the reason for the numb chin or the double vision is that the tigeminal nerve is compressed. Therapy usually seems to be radiation.

My Mom will have an MRI tomorrow to check for any lesion, I am planning to update my post with news as soon as I have them.

I wish you and your Mom all the strengths in the world to get through this.