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09-07-2011, 10:50 AM
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#1
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Member
Join Date: Dec 2007
Posts: 14
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Gemzar - side effects and response rates?
I'm about to start Gemzar for my stage 4 cancer and was wondering about the side effects experienced by people and whether or not it has worked in slowing down the beast. Have already run through navelbene, tykerb/zeloda, doxil, taxol, one clincal trial of MM111 and the list is getting shorter. Wish TDM1 had been approved but there is no local available trial for me (Boston area). Any hints and or success stories for Gemzar would be welcome!
__________________
1999 dx invasive cancer along with DCIS. Invasive is small (.4 and .1) but also microscopically multifocal.(several microscopic areas of invasive cancer). Also lymphovascular invasion. After mastectomy, biggest piece of cancer they found was 4mm. In aggregate, about one cm if not slightly more. Chemo not recommended and px was excellent. ER +, HER neg. Tamoxifen 5 years.
11/07, mets in both lungs, bones (not legs or arms), and skin. ER + and FISH test was 2.5 so mutated into HER2N+. . Arimidex 11/07 - 3/08, Navelbine and Herceptin weekly 1/08 - 8/08. Tamoxifen + Herceptin 8/08 - 1/09. Tykerb/Zeloda 3/09- 7/10. Doxil 8/10- 11/10. Clinical trial 12/10 - 4/11. Taxol + Herceptin 6/11 - 8/11. Gemzar 9/11 - current. Intermittent radiation for lesions on skin, hips, chin nerve, sinus bleeding. Watching and waiting and hoping for a miracle.
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09-08-2011, 01:06 PM
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#2
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Senior Member
Join Date: May 2010
Location: Ireland
Posts: 271
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Re: Gemzar - side effects and response rates?
Hi Laurie,
I've been on gemzar since March and it worked wonderfully on every area except one skin lesion on my chest which I had removed last week. I am on just herceptin/tyverb and zometa for now and will do scans in 8 weeks. I found gemzar very tolerable, a red face the day after infusion but that went away after a day or two, some nausea but the meds controlled it. I hope it works for you.
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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09-08-2011, 06:03 PM
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#3
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Member
Join Date: Dec 2007
Posts: 14
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Re: Gemzar - side effects and response rates?
Thank you so much for your reply. I got my first infusion of Gemzar today and your note makes me feel better. Best of luck to you. We can only watch and wait.... Laurie
__________________
1999 dx invasive cancer along with DCIS. Invasive is small (.4 and .1) but also microscopically multifocal.(several microscopic areas of invasive cancer). Also lymphovascular invasion. After mastectomy, biggest piece of cancer they found was 4mm. In aggregate, about one cm if not slightly more. Chemo not recommended and px was excellent. ER +, HER neg. Tamoxifen 5 years.
11/07, mets in both lungs, bones (not legs or arms), and skin. ER + and FISH test was 2.5 so mutated into HER2N+. . Arimidex 11/07 - 3/08, Navelbine and Herceptin weekly 1/08 - 8/08. Tamoxifen + Herceptin 8/08 - 1/09. Tykerb/Zeloda 3/09- 7/10. Doxil 8/10- 11/10. Clinical trial 12/10 - 4/11. Taxol + Herceptin 6/11 - 8/11. Gemzar 9/11 - current. Intermittent radiation for lesions on skin, hips, chin nerve, sinus bleeding. Watching and waiting and hoping for a miracle.
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09-09-2011, 05:08 AM
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#4
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: Gemzar - side effects and response rates?
Laurie
I just started on my 3rd round of Gemzar...I do three weeks on and a week off per round. I am also getting Herceptin on the first and 3rd weeks. After this series of three, I will get scanned, again. So far the skin mets and neck nodes have shrunk to almost nothing. As far as side effects, it does a number on my blood counts, so they reduced the dose a little so I wouldn't have to skip doses. They do give me Zofran IV push with treatment , but I had them cut the dose in half and I have not had a problem. No hair loss so far, which is a plus. I did run a fever after the 3rd treatment in round 2, but might have been a coincidence. Seems that I am a little more tired, but that could be that my hemoglobin is lower....everyone tells me I look so healthy....is this the beauty secret or is it just the makeup?
Hoping Gemzar does the trick for you....I have been through a lot of chemos, they only seem to work a while, then I need a change. I also had a great response with Eribulen (Halaven) which is fairly new....it might be something to try if the Gemzar isnt the magic potion.
Hoping you are feeling great today after treatment #1!!!
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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09-13-2011, 01:42 PM
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#5
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Member
Join Date: Dec 2007
Posts: 14
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Re: Gemzar - side effects and response rates?
Thank you so very much for your response and encouragement on Gemzar. I noticed you tried TDM1 last Oct - I have been trying to find a trial that included that but haven't been able to. How did it go for you and where were you able to get it?
__________________
1999 dx invasive cancer along with DCIS. Invasive is small (.4 and .1) but also microscopically multifocal.(several microscopic areas of invasive cancer). Also lymphovascular invasion. After mastectomy, biggest piece of cancer they found was 4mm. In aggregate, about one cm if not slightly more. Chemo not recommended and px was excellent. ER +, HER neg. Tamoxifen 5 years.
11/07, mets in both lungs, bones (not legs or arms), and skin. ER + and FISH test was 2.5 so mutated into HER2N+. . Arimidex 11/07 - 3/08, Navelbine and Herceptin weekly 1/08 - 8/08. Tamoxifen + Herceptin 8/08 - 1/09. Tykerb/Zeloda 3/09- 7/10. Doxil 8/10- 11/10. Clinical trial 12/10 - 4/11. Taxol + Herceptin 6/11 - 8/11. Gemzar 9/11 - current. Intermittent radiation for lesions on skin, hips, chin nerve, sinus bleeding. Watching and waiting and hoping for a miracle.
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09-14-2011, 03:01 PM
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#6
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Senior Member
Join Date: Sep 2010
Location: New hampshire
Posts: 44
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Re: Gemzar - side effects and response rates?
I am in a similar boat, only no invasive tumor in 1999- just extensive HER2+ DCIS. I had a metastatic recurrence in 1/08 by the time I was believing I was cured. I have been on similar treatments including the MM111 trial which did not do anything for me unfortunately. I am now on Tykerb and Xeloda and responding well at the moment although I hate the S/E. I have also heard good things about Gemzar. Good luck, and I think you still have lots of options left, and we all hope TDM-1 will be made available soon!
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09-15-2011, 06:27 AM
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#7
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: Gemzar - side effects and response rates?
Laurie
I had 3 treatments of TDM-1 in a clinical trial at Rush in Chicago....unfortunately, my neck node mets continued to grow, so I showed progression, and got the boot from the trial. It is a miracle for some, but not all unfortunately. I had high hopes, but no cigar. I then went on Halaven (Eribulen) and did quite well for 7 months, then started progressing again,,,hence the Gemzar. I had #2 of round 3 yesterday.
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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02-06-2013, 10:19 AM
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#8
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Member
Join Date: Nov 2012
Posts: 8
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Re: Gemzar - side effects and response rates?
Hi Sheila,
Nice to read your response on Gemzar.
I am currently on Herceptin (Every 3 weeks) + Gemzar (1st & 8th Day). Must say it has knocked me down almost. After 1st day of Gemzar + Herceptin my blood counts - Heamoglobin (taken on day 7) nosedived to 8.5. This feel to 7.7 after the 8th day of gemzar (blood count taken on 14th day).
My legs feel shaky and I hardly can walk more than a few steps. I feel really tired and feel like sleeping all the time.
Doctor has already extended my next cycle by a week. I have already taken 2 Neukine shots and a blood transfusion.
Can you and anyone tell me:
1) I took 2 neukine shots after day 8. Did you take any such thing and did it help?
2) In what ranges your Haemoglobin, RBC, WBC and Platelets varied?
3) I had a blood transfusion 4-5 days ago and my count has improved to 9.3 for Haemoglobin. Anyone with similar incidence with Gemzar.
Really Awaiting a reply,
HopeAbides
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02-06-2013, 04:02 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: Gemzar - side effects and response rates?
Hi,
Sheila, who was a dear friend of mine, passed away in December but there are plenty of other folks who have experience with Gemzar an will hopefully give you some useful feedback. I do know that Sheila had a very tough time with WBC and sometimes platelets while on Gemzar, but remember everyone reacts differently.
I've only had one cycle (2 weeks Gemzar/Carbo/Herceptin, 1 week off). So it's not exactly the same regimen as you. And I don't have a lot of tracking of my blood counts on GCH yet (really just 1 week since I go in for labs tomorrow!), but I can tell you my RBC and HGB, WBC and Platelets all dropped. I do take 2 neupogen shots, and my history with those is that they do help.
on day 10 I felt like I had been hit by a mack truck. So I did spend most of that day on the couch!
Sorry I don't have much "data" to share, but I do wish you good luck and increasing counts!
Chris
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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02-06-2013, 09:19 PM
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#10
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Member
Join Date: Nov 2012
Posts: 8
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Re: Gemzar - side effects and response rates?
Hi,
Sorry to hear the news. She put up a brave fight and I was awestruck by her signature "Be kinder than necessary, for everyone you meet is fighting some kind of battle." My prayers are with her.
Hopefully someone will give me more data but I am sure that gemzar is dirty on the counts. May it be good in performance.
Looking forward to more from everyone and all the best for your current combo Chrisy!
take care
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02-07-2013, 09:42 AM
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#11
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Member
Join Date: Nov 2012
Posts: 8
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Re: Gemzar - side effects and response rates?
Hi Chrisy,
One clarification from your side. Did the 2 Neupogen shot you took was administered after both Day 1 and Day 8 of Gemzar?
I am on gemzar with two doses in a cycle, on day 1 and day 8. I am not sure, but i think my counts dropped largely because the onco didnt give me two shots after each round.
Please enlighten,
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02-07-2013, 11:58 AM
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#12
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: Gemzar - side effects and response rates?
I got neupogen, two shots after each infusion. After the week off, my WBC and platelets are holding their own and within normal limits. WBC is because of the neupogen.
RBC is down to 3.06 from 3.53, hemoglobin down from 9.6 to8.5. So I'm getting 1 or 2 units of blood today for that.
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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02-08-2013, 06:48 AM
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#13
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Member
Join Date: Nov 2012
Posts: 8
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Re: Gemzar - side effects and response rates?
You ll be in my prayers Chrisy, get a fast recovery to health and happiness!
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02-10-2013, 03:12 AM
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#14
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Member
Join Date: Nov 2012
Posts: 8
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Re: Gemzar - side effects and response rates?
Hi Chrisy,
Hope you are better now... my experience says there is recovery to an extent after 3 days of blood infusion...
My appetite is terrible though. Lost taste in most of the food...
Take care and keep me posted
HA
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